Kompetenznetze In Der Medizin

GEFÖRDERT VOM

www.kompetenznetze-medizin.de

Forschung für den Menschen

Kompetenznetze in der Medizin

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Frau Antje Schütt (Kompetenznetze in der Medizin),

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Forschung für den Menschen



© Siemens AG, München / Berlin

www.kompetenznetze.de > Fields of Innovation > Medicine

This is why, in 1999, the Federal Ministryfor Education and Research (BMBF) initiated the establishment of medical‘Competence Networks‘ as a measure topromote disease-oriented interdiscipli-nary innovative research and the transferof research results into practice.

By 2003, the total number of funded networks had increased to 17. Doctors in hospitals and private practice, scientists,clinicians, patient organizations and regulatory bodies have joined forces toenable multidisciplinary co-operativemedical research. In being specifically oriented towards diseases with a highsocio-economic impact, these networksfocus on a two-pronged approach, direct-ed at innovation-oriented research andthe transfer of research results into prac-tical and economically viable solutions,with the ambitious goal of integratingexisting nationwide expertise. The net-works have attracted considerable atten-tion nationally and internationally overthe last 5 years, as illustrated by the vastnumbers of research publications, metaanalyses, newly-established guidelinesand quality assurance measures arisingfrom the BMBF-funded initiative. The net-work centers have therefore created an excellent infrastructure through whichthe above mentioned aims can be achie-ved. Measures include:

• the provision of common services, such as reference diagnosis of relevant pathogens or remote expertevaluation of tissue samples.

• setting up and monitoring of multi-center clinical studies, providing thecritical mass for either large scale studies or the rapid identification of

patients with special characteristics• providing centrally located material

and data bases for specific researchprojects

• uniform standards for data entry, storage and evaluation in accordancewith data protection laws

• the formation of nationwide structureswithin and between networks to enableefficient communication between network members, the scientific com-munity, patients and industry partners

• enhancement of visibility through dedicated network homepages (kompetenznetze-medizin.de), newsletters and internet-based infor-mation targeting the general public, specialist interest and knowledge-transfer.

The TMF e.V. (Telematikplattform für medi-zinische Forschungsnetze; www.tmf-ev.de)was launched as an umbrella organiza-tion for clinical research networks inorder to support and promote best prac-tice in interdisciplinary health careresearch. This organization not only pro-vides a platform for technical informationand communication, but also promotesthe creation of standard procedures orguidelines using a collaborative approach.There have been significant achieve-ments as a result of the formation of theTMF; nationally-supported data protectionguidelines, standardized patient consentforms and clearly defined procedures forsoftware use in clinical studies. The mainpriority when establishing such commonprocedures has been to set standards ofthe highest level in accordance withGood Clinical Practice (GCP) and relevantlegal requirements.

Efficient and qualitatively outstanding health

research is a major pre-requisite towards

ensuring progress in medical care.

Medicine

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Networks of Competence

b Acute and Chronic Leukemias

c Atrial Fibrillation

d Brain-Net

e CAPNETZ – Community Acquired Pneumonia

f Cogenital Heart Defects

g Dementia

h Depression and Suicidality

i Heart Failure

j HEP-NET – Hepatitis

1) HIV/AIDS

1! Inflammatory Bowel Diseases

1@ Malignant Lymphomas

1# Parkinson's Disease

1$ Pediatric Oncology and Hematology

1% Rheumatology

1^ Schizophrenia

1& SepNet – Sepsis

1* Stroke

© Siemens AG,München / Berlin

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TMF – a Network for NetworksProfessionalism and Efficiency for Clinical ResearchThe “Telematikplattform für MedizinischeForschungsnetze” (TMF) is a meta-organi-sation which works towards the improve-ment of research and procedures in a net-work environment. Telematics solutionsbut also quality assurance and new work-flows are subjects of interest for the clini-cal research networks.

Scientists from all member networks ofthe TMF collaborate in thematic workinggroups on the development of new stra-tegies for efficient high-quality clinicalresearch.

In acknowledging the need for enhancedco-operative research in medicine, theGerman Federal Ministry of Education andResearch (Bundesministerium für Bildungund Forschung, BMBF) established in 1999a grant for so-called Competence Networksin Medicine. Within such a competencenetwork, clinical research is not limited toa single organisation or university but iswidespread from large research laborato-ries and medical departments to mutualinteraction with general practitioners. Forthis type of ‘cooperative research to work’,scientists, medical doctors and clinicalresearchers communicate and exchangedata with physicians throughout Germanyand even beyond, a mission oriented taskrequiring new methodology and approa-ches. The challenges arising from thesechanges apply to all clinical research net-works. Therefore, the BMBF in co-opera-tion with the funded Competence Net-works in Medicine and related intercon-nection projects established the TMF as a platform to tackle the common challen-ges. This new umbrella network – a net-work for networks – is a forum directedtowards intense information exchangeand the realisation of joint projects. Suchprojects are mission oriented aiming toimprove existing working procedures andthe quality of research within the membernetworks.

Focus of Activities

All networks are dealing with data protec-tion regulations, organisation and dataflow. In addition, the networks addressaspects of licensing and exploitation inview of long-term perspectives. Since avariety of qualitatively different problemsarise from these issues it is the task ofthe TMF to actively support the networksin finding solutions by providing specificrecommendations, codes of practice andnew tools for research. A major focus ofthe TMF is also quality assurance and qua-lity management as indispensable tasks indisease oriented clinical research.

Technical Solutions

By the analysis of individual requirementsand creation of respective user profilesTMF assists to identify applicable techni-cal solutions out of the multiple researchapplications on the market. In case a tele-matic solution for a common problem ofthe research networks is not available,the TMF also initiates corresponding de-velopments.

Administrative Solutions

The TMF represents its members in ne-gotiations with industry and the Germangovernment as well as with national insti-tutions such as the data protection offici-als. As a joint organisation of clinical re-search networks, the TMF can effectivelycommunicate the demands of clinical re-search. At the same time it serves as acontact point for these institutions intonetworked research.

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As major progress, a national data pro-tection concept for the storage of patientrelated data has been developed by theTMF in cooperation with the data protec-tion officials from each German state. Hereparadigms have been created that demon-strate how to handle patient related dataand nonetheless meet the requirementsof privacy in a clinical as well as a scien-tific context. These paradigms have beennation-wide accepted. Thus, by implemen-ting the TMF recommendations, a Germanclinical research network which utilizespatient data is enabled to quickly obtainthe necessary data protection approval.

Example: Informed Consent

An example for general logistic support isthe standardized practice for the informedconsent of patients. To enrol patients inclinical trials, information about the trialand its possible consequences must beconveyed. Written consent is mandatory.For each trial, it is necessary to design a comprehensible information sheetexplaining the purpose of the trial andthe handling of personal data. A surveyamong TMF members revealed that nooptimal solution was so far obtained.Hence a TMF task force developed po-ssible formulations for standardized pro-cedures in conformity with the Germanlegal requirements.

Future of the TMF

Originally, the TMF has been initiated bythe BMBF in 1999 as meta measure tosupport infrastructural developments ofthe clinical research networks , which havebeen founded at the same time. Up tonow, the TMF has developed a relevanceand function far beyond its original aims.Additional networks, not funded by theBMBF, have joined the platform in ack-nowledgement of its broad offers and acceptance by various institutions in me-dical research and in the health care sys-tem. As a legal basis for the TMF, in 2003a “registered association” (“eingetragenerVerein”) was established to enable longterm initiatives directed towards mainte-nance and sustainability of network ba-sed clinical research in Germany.

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Acute and Chronic Leukemias

» «Improved cure rates for leukemia patients through closer cooperation

Nobody knows quite why, but at somepoint the genetic information stored in a cell may change, causing uncontrolleddivision. The new cells fail to mature and are washed into the bloodstream in large numbers. These so-called blast cells have even lost the normal mechanism by which they ought to eventually ”self-destruct”. The body’s perfectly regulatedbalance between newly generated andaging blood cells runs out of control. The consequence for 11,000 people inGermany each year is leukemia. Despitemajor advances in research, chances ofcure are still limited for adult patients –the disease can only be cured in one outof three cases. The competence networkfor Acute and Chronic Leukemias wasfounded to provide better treatment forthese patients and to improve theirchances of cure.

Treating the cause, not the symptoms

There are different variants of leukemia,each consisting of various subtypes. They differ in their molecular and cytoge-netic profiles, as well as in clinical symp-toms, course and prognosis of the dis-ease, calling for a corresponding varietyof treatment strategies. The competencenetwork has therefore chosen to definethe gene and protein expression profilesof various leukemia subtypes on the basis of typical cytogenetic and molecularchanges, and to identify the signalingpathways responsible for causing andstimulating leukemia. This will allow new drugs to be developed, capable of acting directly on individual geneticabnormalities.

The new insights into genetic and molecular processes will form the basisfor new methods of treating leukemiaand may be equally useful in the treat-ment of other forms of cancer.

Quality-assured diagnosis

Precise, reliable diagnosis is an essentialstage in choosing the right therapy. Thecompetence network’s morphology grouphas installed a telemicroscopical system

to provide a consultation service for morphologic features of cells in blood andmarrow. More than 20 institutions inGermany and Austria take part in weeklyinteractive telemicroscopy sessions, whichallow the diagnostic skills of experts all over Germany to be rapidly broughttogether. Regular interlaboratory tests are staged via a diagnostics platform to assure standards of quality in morphol-ogy, cytogenetics, immunophenotypingand molecular genetics.

From lab research to bedside care

The competence network has succeededin merging the data from various therapystudies, including rare forms of leukemia.Meta-analyses allow the results to beapplied on a broader basis. By combiningthese results with basic research findings,it will be possible to develop effectivedrugs and treatment plans tailored to theneeds of individual patients.

Information for practicing physicians

One of the network’s main objectives was to set up an efficient communication andinformation structure. At the Internet site www.kompetenznetz-leukaemie.de, physicians can quickly locate informationon ongoing clinical trials, therapy guide-lines and research results.

Moving into Europe

The EU’s Sixth Framework Programmeaims to create an integrated ”EuropeanResearch Area”. Last year, a group of more than 240 leading European expertsin leukemia research from 23 differentcountries, led by Prof. Dr. R. Hehlmann,submitted a proposal to the EuropeanCommission for the creation of a”Network of Excellence”. The researchershope to create a lasting infrastructure forEuropean research, and thereby furtherimprove the care of leukemia patients.

Tracking down uncontrolled cell division

N E T W O R K C O O R D I N A T O R

Prof. Dr. R. HehlmannDr. Ute BergerKompetenznetz Akute und chronische LeukämienIII. Medizinische UniversitätsklinikWiesbadener Str. 7 – 11D-68305 Mannheim

Phone: +49 (0) 6 21 / 3 83 42 34 Fax: +49 (0) 6 21 / 3 83 42 39E-Mail: zentrale@kompetenznetz-leukaemie.dewww.kompetenznetz-leukaemie.de

Alongside its own basic and appliedresearch on diagnostics, bioinfor-matics and supportive care, the com-petence network also participates in projects led by all major Germanresearch groups specialized inleukemia therapy. The network in-volves about 1,500 physicians and scientists from 400 different centers (university hospitals, specialty prac-tices and large community hospitals).Its goals are to intensify the searchfor new therapeutic strategies andpharmaceutical agents, accelerate the drug developement process,adopt new findings in genomics,telematics and biotechnology in theinterests of medical progress, andshare knowledge acquired throughclinical trials.

Chromosomes mapped by Interphase FISH(Fluorescence in Situ Hybridization)

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Atrial Fibrillation

» «We aim to promote research, medical services and information towards improvement of the diagnosis and treat-ment of atrial fibrillation, the most com-mon sustained arrhythmia of the heart.Atrial fibrillation is the most common sus-

tained cardiac arrhythmia resulting inirregular heartbeat, shortness of breathand dizziness. Patients face an increasedrisk of thrombo-embolic complicationssuch as stroke. The incidence of atrial fibrillation is age-dependent: in the over-all population roughly 1%, in the elderlypopulation up to 20%. By 2050, the num-ber of patients with atrial fibrillation isestimated to rise by 250% due to demo-graphic aging in Western nations.Prevention and effective therapy of atrialfibrillation are unmet needs. Atrial fibrilla-tion is therefore an increasingly serioushealthcare problem.

Scientific projects

• A decentralized patient register isbeing established and structured as abasis for epidemiological studies onthe frequency and cause of asympto-matic, familial or latent atrial fibrilla-tion. Gender-specific aspects and thequestion of whether alcohol may be a trigger factor are also being studied.Furthermore, consideration is beinggiven to the occurrence of complica-tions and to anticoagulation.

• Seven multi-center randomized clinicalstudies are being conducted to evalu-ate different forms of treatment suchas drug treatment, cardioversion,catheter-based or surgical ablationtechniques, in addition to newly devel-oped diagnostic tools such as imagingtechniques, and the risk of neurologicalcomplications.

• Experimental studies are based on theestablishment of a networked tissuebank. These deal with pharmacologi-cally and genetically induced changesin the electrical properties of cells andwith the molecular-biological causes ofatrial fibrillation and the associatedstructural changes.

Infrastructural projects

• The central office of the network isresponsible for coordination, coopera-tion and public relations activities inthe network, for informing doctorsabout training programs and organiz-ing such programs, and for qualityassurance. It also informs patients onevents such as expert hearings.

• An electronic data documentation sys-tem is being established for doctors torecord the pseudo-anonymized data of their patients, e.g. present and pastmedical history, the type of atrial fibril-lation, the underlying heart diseaseand co-morbidity, the chosen therapy.This electronic data documentationsystem is based on the Xtrail module,developed and operated by theInstitute for Cardiovascular Research(www.ikkf.de).

• A biometrical consulting service isbeing set up to support the planning,implementation and evaluation of the scientific studies.

Year 2050:

atrial fibrillation estimated to rise by 250%


Univ.-Prof. Dr. G. BreithardtChairman, Atrial Fibrillation CompetenceNetworkCentral OfficeUniversitätsklinikum MünsterWaldeyer Strasse 30D-48149 Münster

Phone: +49 (0) 2 51 / 83 - 4 53 40Fax: +49 (0) 2 51 / 83 - 4 53 43E-Mail: g.breithardt@uni-muenster.dewww.kompetenznetz-vorhofflimmern.dewww.af-net.de

The Atrial Fibrillation Competence Net-work, set up in July 2003, is an inter-disciplinary national research networkfunded by the Federal Ministry ofResearch and Education (BMBF). Thenetwork comprises patients, physiciansand scientists. Patients are recruitedfrom all levels of patient care in orderto build a nationwide, representativeregistry. Physicians and scientists con-duct multi-center, prospective trialsand combine their methodologicalapproaches to improve the understand-ing of atrial fibrillation and developoptimized diagnostic and therapeuticoptions.

The network coordinates about 20 scientific projects dealing with theepidemiological, clinical and experi-mental aspects of atrial fibrillation.These are subject to internal andexternal quality control and will leadto guideline-based recommendationsfor improving treatment.

A further 3 groups are working onsubprojects to establish an efficientscience infrastructure.

Symptomatic palpitations, shortness of breath and stroke – atrial fibrillation has many different faces.

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Brain-Net

» «The German Reference Center for Diseases of the Central Nervous System

Brain banks have a long tradition in manyother countries, such as in Great Britain,the Netherlands and the United States.Since there are no suitable animal mod-els for most neurological and psychiatricdisorders, scientists investigating thesedisorders depend on the availability ofwell-characterized human tissue.

The Brain-Net initiative

Brain-Net was set up on the initiative ofvarious research networks in the neuro-logical and psychiatric field (Parkinson’s,depression, schizophrenia, stroke), withthe aim of establishing a brain and tissuebank. It collects the brains of deceasedpatients suffering from diseases of thecentral nervous system and the brains of control subjects following donor agree-ment. The 15 participating universityinstitutes are coordinated by the Brain-Net Secretariat at the Institute for Neuro-pathology of the Ludwig-MaximilianUniversity in Munich.

Important service for the brain research community

Tissue samples are supplied on request topromising neuroscience research projects.Brain-Net has been able to fulfil numer-ous requests for well-characterized tissuespecimens, and thus helped many nation-al and international research groups to pursue their work of improving ourunderstanding of the underlying causesof certain diseases and to develop newtherapeutic approaches. In the past, theresults of this type of neuropathologicaland biochemical research have led to the development of drugs for treatingAlzheimer's disease (acetylcholinesteraseinhibitor) and Parkinson's disease (L-DOPA).

The members of Brain-Net have specialexpertise in the following areas:Parkinson's disease and other forms ofParkinsonism, Alzheimer's disease andother forms of dementia, Creutzfeldt-Jakob disease, amyotrophic lateral sclerosis, brain trauma, vascular disorders,multiple sclerosis, epilepsy, brain tumor,addiction, schizophrenia, depression, sudden infant death, pediatric neuro-pathology.

Raising public awareness

Currently, a brain autopsy is the only way to confirm the clinical diagnosis ofmost neurodegenerative disorders, such as Alzheimer’s and Parkinson’s disease. If more brains were available for research, it might be possible toimprove the present misdiagnosis rate of 20%. Brain-Net hopes to ameliorate the situation by informing interestedpatients and their relatives and medicalstaff about relevant clinical symptomsand the usefulness and necessity of post-mortem examinations and dona-tions of tissue to research.

The need for brain and tissue banking


Prof. Dr. H. A. KretzschmarSecretariat:Institute for Neuropathology,Ludwig-Maximilians-UniversitätMünchenFeodor-Lynen-Str. 23,D-81377 München

Phone: +49 (0) 89/ 2 18 07 80 00Fax: +49 (0) 89/ 2 18 07 80 37E-Mail: [email protected]

Contact for the press:Dr. M. NeumannPhone: +49 (0) 89/ 2 18 07 80 65E-Mail: [email protected]

Brain-Net is the German ReferenceCenter for Diseases of the CentralNervous System; it has been fundedby the German Federal Ministry of Education and Research (BMBF)since October 1999.

Its main task is to establish a brainand tissue bank, in pursuit of the following objectives:

• Standardized sampling of brain tissue of patients and control subjects who have given theirapproval for such storage

• Standardized neuropathologicaldiagnosis

• Verification of clinical diagnosisand validation of clinical methods

• Supply of tissue samples to promising neuroscience researchprojects

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CAPNETZ – Community Acquired Pneumonia

»«

CAPNETZ is a nationwide German network of medical practices, clinics, andresearch institutes with the common aim of developing evidence-based strate-gies for diagnosing and treating the widespread disease ”community acquired pneumonia (CAP)”.

Multicenter clinical studies place highdemands on everyone involved, and onthe software being used. This softwaremust support communication – and thuscooperation between people working at different sites. It must be capable ofmanaging shared files and, not least,allow the study to be implemented inaccordance with internationally applica-ble standards.

Conventionally, these requirements aremet through the use of a whole range of software products, each of which fulfills only some of the requirements.Experience shows that the necessarytraining demands a great deal of work,motivation, and time. Resources for thedesired core activity – namely, conductingthe study – are therefore lost.

CAPNETZ has developed a Web-based all-in-one system that establishes a corporate identity, includes the Internetpresence of the competence network,meets the stated requirements, and, furthermore, provides a great deal of support to everyone involved.

Corporate identity & what you see is what you need

All the system's content and functions are in line with the specified corporatedesign, thus clearly promoting the corporate identity.

The ”what-you-see-is-what-you-need”function makes it very easy to use thesystem: for example, dynamic case reportforms in which sections open and closedepending on the last input.

Communication tools & document management

The system supports the necessary networking of people working at manydifferent sites through integrated com-munication tools. Synchronous and

asynchronous connections are estab-lished in the form of video conferences,secure email, etc. There is a sharedaddress book and time planner and a common file repository that permits collaborative working on documents.

Study management via the Internet &good clinical practice (GCP)

In conformance with GCP, the systemsupports the design, conduct, recording,and reporting of multicenter clinical trials. It includes multilevel plausibilitychecks during data input, highlighting of exceptional or missing data, comment-ing and logging of all changes, and moni-toring support. Values are automaticallycalculated and converted, the case reportsheets are produced visually, and stand-ard operating procedures are supported.The entered data is recorded, transmit-ted, and stored in a secure environment,in conformity with data protection guide-lines.

All-in-one

The all-in-one system implemented inCAPNETZ can be used and administeredentirely via the Web. It meets the require-ments for carrying out multicenter clinical trials in a single program environ-ment and can be used for any Internet-based medical-scientific study.

A Web-based all-in-one system for

multicenter clinical studies


Dr. Klaus RichterCAPNETZ GeschäftsführerAlbert-Einstein-Allee 47D-89069 Ulm

Phone: +49 (0) 7 31 / 5 00 25-303Fax: +49 (0) 7 31 / 5 00 25-339E-Mail: [email protected]

Web-based conduct of a multicenterstudy and synergic networking of researchCAPNETZ is carrying out a multi-centerclinical-epidemiological study on CAPand producing a central material baseand database. This involves collabora-tion by the leading research institutesin the field with physicians in generalpractice and hospitals, microbiolo-gists, virologists, epidemiologists, and computer scientists. To conductthe study, a system was developedwhich allows any medical-scientificstudy to be conducted in compliancewith international standards via theInternet. The system covers all stagesof design, conduct, recording andreporting.

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Cogenital Heart Defects

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We are creating an efficient research structure for congenital heart defects that benefits patients, industry, andgovernment, and which gives long-term strength to Germany's reputation as a place of research.

Congenital heart defects are the mostfrequent congenital illness. Each year inGermany, about 6,000 children are bornwith such defects. Owing to the progressmade in pediatric cardiology, heart surgery, and anesthesia, over 90% ofpatients now reach adulthood. The major-ity – currently about 300,000 children,young people, and adults – remain chro-nically ill for life.

Research for people

The number of patients in individualresearch centers is small. A networkedresearch structure on congenital heartdefects is therefore the basis for advan-ces in the treatment of this syndrome.Hitherto, there have been few generallyapplicable details on the epidemiologyand course of the illness. Multi-centricstudies are still the exception. The coreaim of the network is therefore to set upa networked research structure and apatient database. The ”National Registerfor Congenital Heart Defects“ is to be the central epidemiological tool forGerman pediatric cardiology. For the firsttime, the directory will make it possibleto combine data from different studiesand to obtain figures for this illness.

Ensuring the quality of research

The networked research structure makesit possible to distribute studies on thesubject throughout Germany, thereby effi-ciently generating high-quality researchresults. Use is made of the latest techno-

logies, such as magnetic resonancetomography (MRT). With MRT, widely different parameters on the working ofthe right chamber of the heart can berecorded. It is thus possible to obtain ananatomical representation of the heart,and functional data about the working of the chamber, shunt volumes, and valvestenoses or insufficiencies. This could previously only be studied invasively witha heart catheter. For patients, these non-invasive examinations are free of painand involve no radiation. The MRT dataobtained is sent by Telemedicine to thecentral database, where it is networkedand analyzed. The database is availableto all study groups on the network. The high-quality research results rapidly generate guidelines on the treatment of this complex syndrome.

Widespread investigations

For the first time, the networked analysisof data makes it possible to carry outwidespread investigations into the linkbetween treatment and the health ofpatients with the illness. The competencenetwork thus provides added value forscientists and patients. In future, interna-tional groups of researchers will also beable to use this efficient structure.

Networked research:

added value for patients and scientists


Netzwerkzentrale Kompetenznetz Angeborene HerzfehlerAugustenburger Platz 1D-13353 Berlin

Phone: +49 (0) 30 / 4 50 - 57 67 72Fax: +49 (0) 30 / 4 50 - 57 69 72E-Mail: [email protected]

The Competence Network forCongenital Heart Defects is a nationalresearch project, funded by theFederal Ministry of Education andResearch (BMBF) since 2003. It com-bines basic interdisciplinary medicalresearch into congenital heart defects with clinical research andmedical care.

The network focuses on• setting up an efficient

research structure,• ensuring the quality

of research and care, and• informing doctors, patients, and

the public about congenital heart defects.

Doctors, scientists, parent associa-tions, and self-help groups worktogether in the network. The aim is to ensure an effective transfer ofknowledge and to guarantee bettercare for patients with congenitalheart defects.

Magnetic resonancetomography of the pulmonary artery of a child

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Dementia

» «Dementia: Better recognition – better treatment – better help for sufferers by a nationwide research and medical care network

Approximately one million German citizens suffer from dementia, of which200,000 new cases are diagnosed eachyear. A unique network of dementia clinics has been set up, while the expan-sion of structures in healthcare provisionis being tackled. This is the first time that the creation of such structures has been supported through state funding (BMBF). As a result, interdiscipli-nary communication has improved, and expertise and knowledge is being shared which will undoubtedly lead to a significant improvement in medicalcare for dementia patients.

A multi-centered network using standardized diagnostic and therapy procedures

As a result of the formation of the network, standard procedures in neuro-psychological diagnosis of cognitive disorders have been drawn up. Thismeans that dementia patients can bediagnosed according to standardized criteria. Standard procedures in neuro-chemical analysis have also been estab-lished, which ensure that all samples are uniformly prepared prior to theiranalysis for specific disease markers (e.g. amyloid beta petpides and phospho-rylised tau protein).

Furthermore, the samples from the centers are analyzed in three designated laboratories, where specially trained staff ensure observance of defined com-mon guidelines. More representative,larger sets of samples from different centers can now be analyzed collectively,rather than being studied individually by a few highly specialized centers. A uniform procedure for magnetic reso-nance imaging has also been defined and is successfully inplemented. Thisenables data from different tomographicimages to be integrated in the samestudy. In order to ensure that all centers

comply with these newly introduced procedures, phantom examinations arealso carried out. A multi-centered, clinicalinfrastructure has been established forthe purpose of pharmacological double-blind tests. This infrastructure provides a reliable means of monitoring data collection and assuring the quality of, for example, diagnostic screenings, randomization and preparation of medicines in blind form, and shipment of medication by manufacturers anddistributors.

Through the wide implementation ofstandard procedures and the immediateaccessibility of a structured system forcollaborative working, the competencenetwork offers attractive resources forother study projects.

First nationwide network of dementia clinics


Dr. Petra HubrichCoordinator of the DementiaCompetence NetworkCentral Institute for Mental HealthJ5D-68159 Mannheim

Phone: +49 (0) 6 21/ 1 70 39 57Fax: +49 (0) 6 21/ 1 70 37 60E-Mail: [email protected]

The Dementia Competence Network is a nationwide network of 14 leading,university-centered, dementiaresearch groups. Hospitals, doctors,the German Alzheimer’s Associationand commercial partners are involvedin this BMBF-supported project.

The network’s three main areas of work are: early recognition anddiagnosis, epidemiology and genetics,and therapy. The aims of this work are to improve clinical diagnosis andenable a more accurate differentialdiagnosis, to develop more effectivetherapies, and to create a nationwidehealthcare structure to optimizepatient treatment. The network wasformed in June 2002 and has been aregistered association since June 2003.

Processing of spinal-fluid and blood samples for early and differential diagnosis using neurochemical analysis

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Depression and Suicidality

»«

Depression can affect everybodyAround four million people suffer fromdepression in Germany. The Depressionand Suicide Competence Network seeks to improve the lives of these patients by encouraging a more collaborative approach to their care and treatment. When the program ”Alliance Against

Depression” was launched in 2001, it wasinitially restricted to the Nurembergregion. The published results and the new methods developed have been sucha resounding success that the program has rapidly spread to other German andsome European regions. The information material has even been translated intoIcelandic.

The Alliance’s aim was not only to improvethe care provided to people with depres-sion but also – by evaluating the availabledata – to prevent the downward spiralthat in the worst case can lead to suicide.These efforts have not been in vain: Afterone year of intervention, the rate of suicideattempts dropped by a significant 20%.

A four-level action program

The Nuremberg initiative is aimed at four different target groups. Interactivetraining programs have been developedfor medical practitioners, and special educational seminars have been organ-ized for potential mediators such asteachers, priests and geriatric caregivers.An awareness campaign has been produced for the general public, in theform of open days, lectures, flyers andbrochures, and even cinema advertising.And patients suffering from depressive illnesses have been issued with specialemergency cards and a hotline numberfor use in times of crisis.

The European dimension

The significant achievements of the”Alliance Against Depression” in Germanyhave resulted in an expansion of the program into Europe. Funds have beenawarded by the European Commission to implement the program on a pan-European scale from mid-2004 onward.Seventeen countries have shown aninterest in the ”European Alliance AgainstDepression” (EEAD).

Further expansion on the home front

With continued support from the BMBFand the patronage of Federal MinisterRenate Schmidt and Minister of StateGünter Beckstein, the ”Alliance AgainstDepression” program is being expanded.The aim is not only to extend the conceptto other regions of Germany, therebybroadening the exchange of information,but to continually develop and evaluatethe program. Eight different regions in Germany, from Lübeck to Kempten, have so far registered as partners as wellas Iceland and two European regions inSwitzerland and Italy.

The successful ”Nuremberg Alliance against

Depression” will be extended not only to many

German regions but also on a European scale


Prof. Dr. Ulrich HegerlPsychiatric Hospital of the Ludwig-Maximilians-University MunichGerman Research Network ”Depression, Suicidality”Nußbaumstraße 7D-80336 München

Phone: +49 (0) 89/ 51 60 55 53Fax: +49 (0) 89/ 51 60 55 57E-Mail: [email protected]

Optimization of research and healthcare provisionThrough the nationwide Depressionand Suicide Competence Network,doctors, therapists, research groupsand healthcare organizations havebeen brought together with the com-mon objective of tackling the increas-ing number of cases where a depres-sive illness overlaps with suicidal ten-dencies. The project aims to involvescientists, professional carers, thegeneral public and patients on an equalbasis. In addition to specific researchprojects, the aim is to improve the flowof information between all profession-al organizations involved in providingcare for sufferers. The Depression andSuicide Competence Network there-fore includes not only doctors, special-ists, research institutions, universityand psychotherapy clinics, hospitalsand health insurance companies, butalso industrial partners.

The Icelandic campaign poster informs that ”depression can affect everybody”.

14


Heart Failure

» «The Heart Failure Competence Networkprovides specialist information, a commu-nications platform, and practical instru-ments for research in heart failure.

The Heart Failure Competence Networkseeks to act as a value-creation resourceby forging numerous and effective linksbetween patients, clinicians and researchscientists. Value is created through 3 keyareas of activity – specialist information,communication, and working tools and methods – using a targeted approach toaddress each user group according to itsspecific needs.

Specialist information

The presentation of information is crucial.For patients it should be clear and under-standable, for clinicians more concise and practice-oriented, and for researchscientists extremely precise and detailed.Information is disseminated via the Internet, through lectures and symposia,and in printed brochures and other publications.

Communication

An improvement in the flow of informa-tion between clinicians and research sci-entists is being actively targeted throughthe Heart Failure Competence Network.The respective specialist fields of differ-ent working groups and reference centersare integrated in joint study projects, toproduce collective results which could notbe achieved by an individual group alone.A Web portal facilitates collaboration andcommunication between scientists, clini-cians and patient groups through addresslists, newsletters and forums.

Working tools and methods

The third key area of activity is to developtools and methods to improve and simpli-fy scientific research and the treatmentof heart failure. To coordinate this work, a center for study management and bio-metry has been set up in Leipzig. Thecenter’s main task is to develop standarddata formats and uniform database struc-tures, including data protection, as ameans of simplifying the planning andexecution of follow-up studies, and assur-

ing data quality. It also develops practicalguidelines for the medical profession,incorporating the latest research findings.

Milestones

for 2003/2004

Standardized cardiology records

Leading experts in the area of heart fail-ure have recently standardized proce-dures for data collection in clinical stud-ies. This means that studies can be quali-tatively and quantitatively comparedfor the first time, which may lead to thediscovery of important, new findings.Additionally, the setting of these stand-ards provides a framework for other studies, which will inevitably result ingreater efficiency. In this respect, theHeart Failure Competence Network hasalready achieved one of its main aims: toprovide methods and tools which assistscientists in their work.

Creation of a biomaterials bank

The Heart Failure Competence Networkhas been given official approval to set upa biomaterials bank. This central facility,which fulfils strict data protection require-ments, will supply high-quality and rare tissue samples prepared accordingto standard procedures, for use in experi-mental studies.

Informative seminars for patients

Prevention is another important aspect of heart failure which the competencenetwork seeks to promote by providingpatients with clearly presented informa-tion on the symptoms of the disease. Aspart of a pilot project, regular seminarsare held in Berlin at the Charité Campus,highlighting selected topics related toheart failure. It is hoped that this servicecan be offered on a national scale in the near future.

Targeted areas of activity


The Heart Failure Competence NetworkAugustenburger Platz 1Mittelallee 11, 2. OGD-13353 Berlin

Phone: +49 (0) 30 / 450 576 812Fax: +49 (0) 30 / 450 576 962E-Mail: [email protected]

Heart failure is a life-threatening con-dition with a mortality rate compara-ble to many forms of cancer. It affectsmore than 1 million people in Germanytoday, and is expected to become the most common cardiovascular dis-ease of the 21st century, in view ofthe steadily rising number of cases.The Heart Failure CompetenceNetwork was founded in June 2003and represents an interdisciplinarycollaboration between scientists andhealthcare providers.

The aims of the Heart FailureCompetence Network are to encouragemore effective scientific research, better patient care, and greater publicawareness. Formation of network has enabled the creation of a nationalforum and action plan, which willimprove not only the quality of life butalso the life expectancy of sufferers.

15


HEP-NET – Hepatitis

» «Network of research, at all levels of care,for the benefit of hepatitis patients.

The diagnosis of chronic hepatitis C or Bis often a shock for those concerned.Numerous questions arise among thechronically infected in Germany – estima-ted to be one million. What is hepatitis?How is it transmitted, and am I a risk tomy family? What are its consequences,and how can I be treated?

Many of these questions have not been satisfactorily answered – even forresearchers. Improving the general stand-ard of diagnosis and treatment requiresthe cooperation of epidemiologists, clinicians, and pure scientists – which isthe starting point of Hep-Net. At thesame time, intensive publicity – particu-larly regarding prevention – is designedto reduce the expected peak of hepatitispatients in Germany in 2020.

Innovation highlight regarding acute hepatitis C

After only two years, Hep-Net has alreadyhad some success. For instance, closecooperation between universities andregistered doctors has led to an interna-tional standard for the treatment ofacute hepatitis C. With twenty-four weeksof treatment using Interferon alfa, the illness can be prevented from becomingchronic in more than ninety percent ofcases. In addition, virus kinetic analysesof large numbers of patients have madeit possible to develop a ”response calcu-lator”. This is able to predict how individ-ual patients with chronic hepatitis C are likely to respond to treatment, and itmotivates them to carry on with theInterferon-based treatment, with all itsside effects.

Furthermore, an approach has beenadopted in Germany that is unique in theworld – namely, the establishment of”model regions”. In these, the active coop-eration of doctors and patients ensuresthat data about the illness, and tests onserums and tissue, are made available tothe Hep-Net research projects, including,for example, regarding the pathogenesisof the disease. A comprehensive analysisis also carried out of the care provided in these geographical model regions, and wide-ranging educational strategieswith publicity value are put into effect.

Profile of the competence network

Hep-Net is of one of the largest compe-tence networks in medicine within Germany. The close-on fifty Hep-Netresearch projects – which are primarilythe responsibility of various universityinstitutes and about 120 researchers –receive an annual grant from the BMBFof roughly 2.5 million euros. Since Hep-Net was launched in February 2002, about 600 additional associate membershave been recruited. Particularly withinthe ”model regions”, they are making an active contribution to research intovirus hepatitis.

”All of a sudden, everything‘s different”


Prof. M. P. Manns, M. D.(Chairman of the network)Kompetenznetz Hepatitisc/o Medizinische Hochschule HannoverCarl-Neuberg-Str. 1D-30625 Hannover

Phone: +49 (0) 5 11 / 5 32 68 19Fax: +49 (0) 5 11 / 5 32 68 20E-Mail: [email protected] www.kompetenznetz-hepatitis.de

Alongside the network of universityand other research facilities intendedto improve research into virus hepa-titis in Germany, Hep-Net has the taskof providing the latest research resultswithout delay to patients being treat-ed outside the specialized universityinstitutions. The aim is to guaranteehigh-quality management of viral hepatitis at all levels of care. A net-work of clinical researchers and purescientists, doctors in hospitals and intheir own practices, and patient self-help organizations are activelyincorporated into research projects.Important focal points of researchinclude the development of a vaccineagainst hepatitis C, the conduct ofclinical studies, and the collection ofepidemiological data on the incidence and prevalence of hepatitis B and C in Germany.

16


HIV/AIDS

» «The HI-Virus adapts quickly. Research in the HIV/AIDS competence network too.

The bringing together of scientific expert-ise through the HIV/AIDS competencenetwork has resulted in tangible success.One example is a project studying HIV-patients who are co-infected with thehepatitis C virus (HCV). The prognosis forsuch patients is significantly worse thanthat of patients with the HI-virus alone.They often die from complications associ-ated with liver damage, which has beeninitiated by the hepatitis virus. Scientistsin Bonn, however, have made it easier for co-infected patients to decide on anappropriate therapy. The scientists haverecommended that the co-infectedpatients, either at a critical stage of HIV-infection or when both viruses are circu-lating in the blood, receive a combinationtherapy. This combination therapy includesthe latest treatment against HIV (HAART)and ensures that the immune systemrecovers while keeping the hepatitis virusin check. As a result, the life expectancyof the patient rises, which is a significantachievement outweighing the side-effectsof the combined medication.

The importance of the gastrointestinal tract

The HI-virus is not only present in thebloodstream of HIV-patients, but also inthe intestinal mucosa. It is here that largenumbers of immune cells die and, as aconsequence, many patients become illthrough stomach and/or intestinal infec-tion resulting in severe diarrhea. A groupof scientists led by Professor Martin Zeitzhas found that the intestine is most probably the main production site in thebody for the human immunodeficiencyvirus. The virus attacks the intestinalmucosa at an early stage and multipliesparticularly vigorously in this region.Indeed, the number of copies of HI-virusin the intestine has been found to be upto 1000-fold higher than in the blood. It is however in the intestinal mucosa,according to Zeitz and colleagues, wherethe HIV-medication works most rapidlyand effectively. Using the latest combina-

tion therapy, the immune cell number in the intestinal region has been found toincrease 10 times as quickly as in theblood. Indeed, within three of months ofbeginning therapy, the immune cell levelin this region may even be comparablewith healthy individuals. In this way, theintestine can successfully combat thevirus with the result that symptoms, suchas diarrhea, cease.

Tracking viral resistance

HI-viruses have the ability to transform.This characteristic makes it difficult tofind a successful, long-term drug treat-ment as the virus can quickly change andbecome resistant to such treatment.According to the latest results from theHIV Seroconversion Study, which is beingcarried out by the Robert Koch Instituteand supported by the HIV/AIDS compe-tence network, around 20% of newlyinfected individuals in Germany are carry-ing resistant HI-viruses. The project, how-ever, is ensuring speedy identification of resistant forms of the virus and moni-toring the change in efficiency of treat-ment on such forms.

Finally, the long-term course of the illnessis also being observed.

HIV research gives inspiration to other areas of research

The findings obtained through HIV-research are not only benefiting thoseinfected with HIV and AIDS-patients, butother areas of medical research as well.Significant advances, linked to HIV-research, have been made in immunology(particularly immunization), oncology,infectious diseases and pharmacology.Prime examples of this are the drugsZanamivir (used against influenza) andLamivudine (used in hepatitis B therapy).

HIV has many faces – research as well


Prof. Dr. med. Norbert Brockmeyer(Chairman of the HIV/AIDS competence network)Department of Dermatology and Allergology at the Ruhr University BochumGudrunstrasse 56,D-44791 Bochum

Phone: +49 (0) 2 34 / 5 09-34 71, -34 74Fax: +49 (0) 2 34 / 5 09-34 72, -3475E-Mail: [email protected]

Leading clinical and research sciencegroups in Germany have come together within the framework of the HIV/AIDS competence network.Through this national research alliance,HIV-patients have been recruited to take part in clinical studies nation-wide for the first time. It is hopedthat the results of these studies willimprove the international standing of HIV-research in Germany. The coreproject within the HIV/AIDS compe-tence network, which was started in June 2002, is the formation of acentral database drawing informationfrom a representative, national,patient cohort. As a result, significantfindings and anomalies in the areasof epidemiology, medicine, psycho-sociology and healthcare should beidentified at an earlier stage.

Beautiful, but dangerous: the Human Immunodeficiency Virus (HIV)

17


Inflammatory Bowel Diseases

»«

We aim to promote networked research,medical services and information towardsimprovement of the diagnosis and treat-ment of inflammatory bowel diseases. Our goal is to resolve this medical prob-lem within the next decades.

A worldwide, multi-center clinical trialstarted recently, focussing on the assess-ment and clinical significance of Crohn’sdisease lesions detected by capsule endoscopy. This study will address the difficult task of predicting the course ofthe complicated, relapsing disorder. It isorganized and led by clinicians from theGerman Network on Inflammatory BowelDiseases.

Crohn’s disease is a chronic relapsing dis-order in which cycles of remission alter-nate with clinical activity. Lesions canoccur in any region of the gastrointestinaltract. Until recently the only way for phy-sicians to ”take a look inside” the intes-tine was through the use of upper or lowerendoscopy. The ingestible endoscopiccapsule is the first method yielding pic-tures throughout the whole small bowel.

Pioneers in capsule endoscopy

The patient prepares for capsuleendoscopy with a ten-hour fast. The sin-gle-use capsule has to be activated, isthen swallowed and transported by peri-stalsis. Twice every second LEDs flash anda wide-angle magnified picture is taken.Each frame is immediately transmitted toa small data recorder connected with aset of sensors on a belt around the waist.This out-patient procedure takes about 8hours. Data from the recorder are trans-ferred to a computer workstation foranalysis by a physician. The university

hospitals, involved in the Network onInflammatory Bowel Diseases, are amongthe pioneers using capsule endoscopy inGermany.

Maintenance of remission in Crohn’s dis-ease can require the use of drugs thathave considerable side effects. Presently,the intensity of therapy is increased if dis-ease activity returns. If it were possible topredict relapses, therapy could be intensi-fied as a preventative measure. Until nowonly experimental immunological param-eters – impracticable for wide-spread use– can be used for the prediction of relapses.

The objective of the new study is toscreen patients with Crohn’s disease inmedically induced remission for the pres-ence of small bowel lesions. It is hypothe-sized that these may identify patients

with unstable remission who are threat-ened by a return of disease activity in thenear future. Patients in the study will beobserved over 24-month period.

A wish come true

Patients would certainly welcome it ifnon-invasive procedures like capsuleendoscopy could eventually replaceunpleasant and often painful investiga-tions. This study may be a first step inthis direction.The industrial partner in this study isGiven Imaging Ltd, Yoqneam, Israel.

Take a look inside – Charting Crohn’s disease

using ”capsule endoscopy”


Speaker: Prof. Dr. U.R. FölschScientific secretary: Prof. Dr. S. Schreiber

Clinic for General Internal Medicine of the University Hospital Schleswig-HolsteinCampus KielSchittenhelmstrasse 12D-24105 Kiel

E-Mail: [email protected]

New technical and pharmaceuticalbreakthroughs have dramatically im-proved the prognosis of patients withCrohn’s disease or ulcerative colitis.

Research groups at the universityclinics of Kiel, Berlin, Regensburg and Tübingen, together with over 100 hospitals and research institutes, and the national patient organization, are working to integrate new meth-ods in healthcare practice.

With access to numerous specimenbanks for serum, tissue samples andgenetic material, and significantgroups of patients, the competencenetwork’s project groups have beenable to formulate and answer ques-tions related to molecular epidemio-logy, disease models, clinical studies,and the social and economic conse-quences of disease.

The labyrinth represents the complexity of the gastrointestinal tract – and of the scientific challenge

An ingestible camera measuring 11 x 26 mm and weighing less than 4 grams

18


Malignant Lymphomas

»«

The Malignant Lymphomas competencenetwork brings together the most recentscientific findings and knowledge in thisfield and improves the cross-disciplinaryflow of information, with the aim of ensu-ring the best possible treatment, care andinformation for all lymphoma patients.

Helping to choose the right therapy

In view of the vast number of publishedresearch papers, systematic reviews sig-nificantly aid the decision-making processfor doctors and patients when determin-ing the best possible treatment. Oneresearch group supported by the network,the Cochrane Hematological MalignanciesGroup (CHMG), has published 4 suchreviews to date, with a further 24 in pre-paration. As part of the CHMG’s ”consumernetwork”, patients also contribute to thereviewing process.

Benchmark data from private practices

Over 80 practicing hemato-oncologistshave joined forces in the competencenetwork. In order to evaluate and com-pare malignant lymphoma patient dataand treatment, while preserving thepatients’ anonymity, a special softwareprogram (MLData) has been developedwhich extracts relevant information from practice records and enters it in an electronic spreadsheet. This software was used to evaluate data from morethan 2,000 patients in 8 practices in 2002.The analysis of patient data from 12 private practices is now in progress forthe year 2003.

The Web as information resource

The Malignant Lymphomas competencenetwork website www.lymphome.de was relaunched in September 2003. It provides patients and doctors with a reliable source of the latest scientificinformation on malignant lymphomas,including reports on current researchprojects. Contributions from otherEuropean lymphoma study groups willalso be available soon. In order to extendits reach, the site’s English-language content is currently being augmented.

All lymphoma patients are entitled

to the best possible treatment


Prof. Dr. Volker Diehl (network spokesman)Central Office of the CompetenceNetwork Malignant LymphomasUniversity Hospital CologneJoseph-Stelzmann-Str. 9D-50924 Cologne

Phone: +49 (0) 2 21 / 4 78 74 00Fax: +49 (0) 2 21 / 4 78 74 06E-Mail: [email protected]

Through the Malignant Lymphomacompetence network, leading lym-phoma research groups and health-care organizations have combinedtheir expertise in order to improvecommunication between scientists,physicians and patients, and ensurethat recent scientific developmentsare implemented as quickly as possi-ble in primary healthcare practice.Specialists in hemato-oncology,pathology and radiology, togetherwith scientists, statisticians and com-puter scientists work towards thisgoal alongside the research groups.Patients and self-help groups are alsoinvolved, thereby ensuring that theirviews and requirements are consid-ered when determining the objectivesof the research projects.

www.lymphome.de offers patients and doctors accurate and up-to-date information about malignant lymphomas.

Lymphoma entities in eight practices

19


Parkinson's Disease

»«

The Parkinson’s Competence Networkseeks to create links between research,diagnosis and therapy in an attempt to optimize care for patients, and to allow research into Parkinson’s disease in Germany to play a more significant role at an international level.

Parkinson’s disease was first described(as ”shaking palsy”) in 1817, by the Englishphysician whose name it now bears. The chronic, progressive illness is largelybut not exclusively a disease of old age,afflicting 1 in a hundred persons over 60.The chief symptoms are slowed move-ments, occasional tremors, muscular stiffness, and trouble with balance andcoordination.

… communication becomes all the more important

Collaboration and communication are thebywords of the Parkinson’s CompetenceNetwork. The first step in its develop-ment was therefore to set up a secureWeb-based data entry and communica-tion system, for the analysis of data from different projects. Access to patientdata is restricted to authorized physi-cians, and all possible security mecha-nisms are implemented to ensure dataprivacy (including the pseudonymizationof patient data).

Multi-center studies

The participating members of theParkinson’s Competence Network, withtheir vast experience in this field, formedthe German Parkinson’s Study Group in2003. This group will carry out national-and international-scale studies on behalfof the pharmaceutical industry as well asinvestigator-initiated studies. The nation-al database (3800 entries as of end 2003)makes it possible to quickly recruit patientswith specific symptoms or disorders forparticipation in clinical studies.

Therapy guidelines

A set of guidelines for the treatment ofParkinson’s disease have been drawn upby the Parkinson’s Competence Network(KNP) and the German NeurologicalSociety (DGN), in consultation with theGerman Parkinson‘s Society (DPG) andnumerous other respected organizationsrepresenting Germany’s medical and neurological practitioners, as well as anational patients’ self-help group. These

guidelines were published in book formby the Thieme-Verlag in 2003, and arealso available on the publisher’s website,or through the authors’ (KNP and DGN)websites.

Economic analysis and benchmarking

Several studies are currently under wayto evaluate the medical and non-medicalcosts of treating patients with Parkinson’sdisease. Various factors are taken intoconsideration, including the stage of thedisease and the extent of motor compli-cations. Certain results of these studieshave already been published. Meanwhile,the Parkinson’s Competence Networkcontinues to work on disease managementconcepts in collaboration with the Germanneurologists’ professional association(BVDN), to encourage the use of standardrecording practices for patient data.

When movement is restricted …


Professor Wolfgang H. Oertel(Spokesman for the ParkinsonCompetence Network)Dr. Karla Eggert (Coordinator for theParkinson Competence Network)

Scheppe Gewissegasse 8D-35039 Marburg

Phone: +49 (0) 64 21 / 2 86 52 72Fax: +49 (0) 64 21 / 2 86 53 08E-Mail: [email protected]

The patient is of central importanceThe main aims of the Parkinson’sCompetence Network are to makeParkinson’s research more goal-directedand effective, and to speed up thetransfer of basic and clinical researchresults into healthcare practice. Patientsstand to benefit considerably fromthe improved communication betweenresearchers, doctors, clinics, insuranceand medical companies, and self-helpgroups.

Three databases have been created;a central patient register, a gene bankand (in cooperation with Brain-Net) a brain bank. Other projects focus onearly and differential diagnosis, multi-center pharmacological and deep brainstimulation studies and economicanalysis of the cost of care.

Movements have no real momentum,as if obstructed by an inner wall.

With early diagnosis and the latest treatment,the wall can be broken down.

20


Pediatric Oncology and Hematology

» «A more coordinated approach to improving diagnosis and treatment

To discover that your child has cancer is one of the cruelest blows of fate that could befall a family. So it is all the more encouraging to know that medicalprogress has significantly improved survival rates over the last twenty years.

A project launched by the CompetenceNetwork Pediatric Oncology andHematology (KPOH) and led by ProfessorJochen Harbott is devoted to MinimalResidual Disease (MRD) in leukemia andlymphomas. By employing innovativemethods of detecting cancer cells thatotherwise seem to have ”disappeared”, it has led to the more accurate identifica-tion of malignant cells in patients suffer-ing from leukemia or non-Hodgkin’s lymphoma, which together account forhalf of all cases of childhood cancer. Withthe combined help of molecular geneticsand immunology, it is now possible topick out one leukemia cell among a mil-

lion normal cells. The technique is beingused to define personalized treatmentplans with a greater chance of success.Such methods will soon enable leukemia-specific indicators to be defined for eachpatient, allowing therapeutic progress to be monitored more closely.

Unique tumor tissue bank

In 2001, the network set up a tumor tis-sue bank containing a unique collectionof high-quality samples for research,taken from patients with rare tumors.They include representative samples ofthe majority of malignant tumors foundin children. It is hoped that this will leadto new biological, immunological andmolecular-genetic findings that will helpto improve diagnosis and treatment.

New method can detect one leukemia cell

among a million normal cells


Prof. Dr. med. Dr. h. c. Günter HenzeKoordinationszentrale KompetenznetzPädiatrische Onkologie und Hämatologie

Charité - Universitätsmedizin BerlinCampus Virchow-KlinikumAugustenburger Platz 1D-13353 Berlin

Phone: +49 (0) 30 / 450-566834Fax: +49 (0) 30 / 450-566906E-Mail: [email protected]

The Competence Network PediatricOncology and Hematology (KPOH) isan alliance of scientists, medical prac-titioners, hospitals, special cancer units,and patients, with a common interestin improving pediatric oncology. It wasfounded in 1999 as a means of coordi-nating the activities of all those whohave to deal with these relatively rarebut life-threatening diseases.

The network aims to develop a morecoordinated approach to improvingthe diagnosis and treatment of cancerin children, including appropriatequality standards. Today, over 90% ofyoung cancer patients in Germanyreceive medical care on the basis ofstandardized treatment plans. Thenetwork currently hosts ten collabo-rative projects spread over 3 major areas: infrastructure, basic researchand clinical research. An extensivelibrary of useful information forpatients, their families, healthcareprofessionals, and researchers can beconsulted on our Web portal athttp://www.kinderkrebsinfo.de.

21


Rheumatology

»«

People with systemic inflammatory rheu-matic diseases now have more hope than ever. As a result of more accurate diagnosis and new, more effective thera-pies, it is now possible to slow down the destructive processes which occur inthe joints and internal organs of sufferers.

”I’m very sorry, you have rheumatoidarthritis. I’m afraid there’s nothing we can do about it.” Many patients haveheard this sobering statement from theirdoctors, who until recently were unableto alleviate their patient’s suffering or to slow progress of the disease, due tothe lack of effective treatments.

But today things are different. No otherbranch of medicine has made such rapidprogress in recent years. This is largelydue to collaboration between clinicalrheumatologists and research scientists,as exemplified by the RheumatologyCompetence Network. Significant advan-ces have been made, which are now beingtransferred to patient care and treatment:

New treatment for Bechterev’s disease

Clinical scientists in the network haverecently shown that a genetically engi-neered antibody against the proinflam-matory cytokine tumor necrosis factoralpha (TNF-�) can be successfully used totreat patients suffering from Bechterev’sdisease (ankylosing spondylitis). Morethan 80% of patients who received thera-py over a three-month period experi-enced a significant improvement in theirclinical symptoms. In 50% of these cases,the new drug infliximab reduced diseaseactivity by more than half.

Improved diagnosis of rheumatoid arthritis

Is it rheumatoid arthritis or not? Thisquestion is difficult to answer in the earlystages of the disease. A network projecthas however established that certain

molecular structures present in a patient’scartilage tissue act as auto-antigens. As a result, a routine diagnostic procedureshould soon be available that facilitatesidentification of the disease in its early stages.

Diagnosis of nonspecific arthritis

Using the Rheumatology CompetenceNetwork reference laboratory, specialistsand doctors will soon be able to diagnosenonspecific forms of arthritis. Accordingly,analysis of joint tissue or synovial fluid for Chlamydia is already available and onefor Borrelia is anticipated.

Specialist attention pays dividends

Only around 20% of all rheumatoid arthritis patients are seen by specialists,according to an analysis of patient records.However, it has been established thatwhen patients are treated by specialiststheir prognosis significantly improves.

Stem cell transplantation for auto-immune diseases

Research scientists working in the networkhave recently developed a novel stem cell treatment for patients suffering fromsystemic lupus erythematosus (SLE). The patient’s immune system is destroyedby high-dose chemotherapy. Patients thenreceive some of their own blood stemcells (previously withdrawn), which facili-tate the rebuilding of the immune system.Although the procedure is still being testedand refined, several successful trials havebeen carried out. The study strongly sug-gests – for the first time – that a rheumaticdisease can possibly be completely cured.

Reliable diagnosis and more effective therapies


Rheumatology Competence NetworkCentral Business Officec/o German Rheumatism Research CenterSpokesman: Prof. Dr. Andreas RadbruchCoordinator: Dr. Cornelia RufenachSchumannstrasse 21 / 22D-10117 Berlin

Phone: +49 (0) 30 / 4 50 51 33 72Fax: +49 (0) 30 / 4 50 51 39 88E-Mail: [email protected]

Clinical scientists in rheumatologyclinics at 6 universities (Berlin, Düssel-dorf, Erlangen, Freiburg, Hanover andLübeck/Bad Bramstedt), research scientists from the German Rheuma-tism Research Center in Berlin, doc-tors from 27 of the regional ArthritisCenters and practicing rheumatologistsare successfully collaborating throughthe Rheumatology Competence Net-work. Their aim is to discover thecauses of rheumatic diseases, to facili-tate and improve diagnosis and todevelop more effective therapies. Themain areas of work are rheumatoidarthritis, spondyloarthropathies andimmune vasculitides. Basic research isconducted to investigate the molecular-biological causes of the inappropriateimmune response. The network alsocarries out assessments of healthcareservices, on the basis of a uniquepatient database storing records of31,000 adults and 3,500 children annu-ally, as a means of identifying possi-ble target areas for improvement.

Spine of a patient suffering from Bechterev's disease: As the MRI images show, the new anti-TNF-alpha therapy stops the harmful inflammation (red) caused by the disease. From left to right: Initial stage; after 12 weeks therapy; after 54 weeks therapy.

22

A targeted choice of the appropriatepharmacological and psychotherapeutictreatments for schizophrenia, backed byspecialized psychosocial care, makes itpossible to reduce the severity of symp-toms and prevent relapses in 70% ofcases. But treatment is often not soughtor commenced until several years afterthe onset of the disease, and is notalways carried out according to recom-mended guidelines. Nor is treatmentalways adapted to the specific needs offirst-episode patients. This is where theresearch network hopes to bring aboutimprovements.

A checklist of common early symptoms

The network has set up the first fournational early-detection centers, to allowsuspected cases of schizophrenia to becorrectly diagnosed at the earliest possi-ble stage, and treatment started wherenecessary. A checklist of common earlysymptoms has been distributed to localnetworks of schools, general practitionersand advice centers, to help identify persons at risk.

A special psychotherapy manual has been compiled for the treatment of first-episode patients. A comparative pharma-cological study has demonstrated thatlow doses of drugs with fewer sideeffects can significantly relieve manysymptoms.

Guideline-based documentation software

Quality management programs in theoutpatient and inpatient care of schizo-phrenia patients show that quality assur-ance strategies (benchmarking, obser-

vance of guidelines) are capable of signif-icantly ameliorating outcome. The net-work has developed special guideline-based documentation software for use in outpatient work. Content is being con-tributed by professional associations ofneurologists, psychiatrists and other spe-cialized competence networks, enablingthe software to be further developed and integrated in routine care programs.

New strategies

New rehabilitation strategies have beendeveloped and positively evaluated to remediate impairments in emotional perception. Since impairments signifi-cantly contribute to the schizophreniapatients' poor ability to function in asocial context, such new treatment strate-gies aim to facilitate patients' social integration.

To gain a better understanding of theunderlying causes of the disease and bio-logical factors that modulate its progres-sion, a gene bank is being set up to studyfundamental neurobiological aspects inmore detail.

Although schizophrenia patients are stilloften subject to social discrimination, theinternational campaign ”open the doors”is beginning to have an effect, provingthat prejudices can be overcome by promoting awareness and social contact(e.g. public lectures and discussions).


Schizophrenia

» «A network for peopleConstant progress in all aspects of care


Prof. Dr. Wolfgang Gaebel (spokesman)Head Office: Department of Psychiatry, University DusseldorfRhineland State Clinics DusseldorfBergische Landstrasse 2D-40629 Düsseldorf

Phone: +49 (0) 2 11 / 9 22-27 70Fax: +49 (0) 2 11 / 9 22-27 80E-Mail: info@kompetenznetz-schizophrenie.dewww.kompetenznetz-schizophrenie.dewww.psychosenetz.de

Schizophrenia is a severe psychoticdisorder that affects approximately1% of the world’s population at leastonce during their lives. The illness hasa tendency to become chronic, andcauses a great deal of suffering toaffected individuals and their families.The direct and indirect costs of schiz-ophrenia in Germany are estimated at about 3.5 billion euros per year. Theaims of the research network are to:

• detect symptoms and commencetreatment at an early stage,

• apply existing therapeutic treatments and improve them,

• prevent the illness from taking a chronic course,

• optimize care and treatmentthrough quality management and knowledge transfer,

• reduce stigmatization and discrimination,

and to improve the research infra-structure, for instance by building updatabases.

Typical progression charts of schizophrenia psychoses

23


SepNet – Sepsis

» «Sepsis is a major challenge for medicine and the health care system

In the USA, around 263,000 deaths arecaused by sepsis each year, which is morethan the number of deaths attributableto acute myocardial infarction. This repre-sents an annual incidence of 300 casesper 100,000 population. The comparablefigures for new cases of colorectal cancerand breast cancer are 50 and 110 respec-tively. The annual toll of sepsis cases inGermany lies between 44,000 and 95,000,resulting in estimated direct medical costsof around 2.45 billion euros.

BMBF funding has been secured for theinitial phase of setting up a sepsis competence network (for 3 years fromFebruary 2002), and a further total of 1.6 million euros has been contributed by industrial research sponsors, for theconduct of studies.

Current projects:• Prevalence study• VISEP study• Central Specimen Bank

”Prevalence of severe sepsis and septic shock in German critical-care units (Prevalence study)”

This prospective, interdisciplinary, epi-demiological multi-center observationstudy is the first in Germany to gathervalid, representative data on the frequen-cy, morbidity and mortality of sepsis, the healthcare structure, diagnostic andtherapeutic methods, and related costs.The survey was carried out on the basisof a representative sample of hospitals

(475 critical-care units) throughoutGermany. Over 4,000 patients have beenscreened, and the first results are expect-ed in mid-2004.

”Prospective, randomized, multi-centerstudy on the effect of colloid vs. crystal-loid volume replacement therapy and of intensive vs. conventional insulin therapy on organ functions and survivalin patients with severe sepsis and septicshock (VISEP study)”

Whereas present-day sepsis researchfocuses mainly on adjunctive therapeuticapproaches, the value of individual, supportive, usually lower-cost treatmentstrategies has never been investigated.The VISEP study is the world’s first tostudy the question of which volumereplacement approach or which type ofinsulin therapy should be used for sepsispatients in future. So far, 200 out of aplanned 600 patients have been recruitedfor the study.

Central Specimen Bank

The third SepNet project is to set uplarge-scale specimen banks for the inves-tigation of genomic, proteomic andmolecular-biological factors. The medium-term aim is to enable fast, reliable diag-nosis and to identify new therapeuticavenues (risk assessment, target identifi-cation).

SepNet – Research platform

for multi-center studies in Germany


Prof. Dr. med. Konrad ReinhartKlinikum der FSU JenaKlinik für Anästhesiologie und Intensivtherapie

Phone: +49 (0) 36 41 / 932 3381Fax: +49 (0) 36 41 / 934 795E-Mail: [email protected]

SepNet is the world’s largest inde-pendent research network devoted to sepsis, representing 15 regionalcenters in Germany and 8 affiliatedhospitals, who treat 30,000 critically ill patients each year.

SepNet aims to reduce the presenthigh mortality rate by:

• creating efficient structures for advanced clinical trials in sepsis research,

• launching and conducting innovative, internationally competitive studies under professional management,

• introducing the concept of evidence-based knowledge into clinical practice in Germany.

The ‘backbone’ of SepNet:regional centers and associated hospitals.

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Stroke

»«

Almost 200,000 people suffer a stroke in Germany every year. The Stroke competence network aims to assist suchpeople in a realistic, practical way bymaking the latest, practice-oriented research findings available.

During a stroke the blood supply to a partof the brain is lost and the brain tissue in that area may cease to function. Themost common cause is a blood clot or,less frequently, rupture of a blood vesselsupplying blood to the brain. In Germany,a stroke is the third most common causeof death and the most common cause ofacquired disability in adults. Many strokepatients suffer paralysis, sight or speechdefects and are therefore completelyreliant on daily care.

Breakthrough in acute therapy

The higher resolution of the latest MRItechniques now makes it easier to differ-entiate between non-functional and functional brain tissue in stroke patients.This in turn facilitates the administrationof a drug treatment called lysis therapy,which dissolves blood clots in the brain.The improved diagnostic procedure, nowavailable in many German clinics, givesmedical staff more time to apply treat-ment in the critical three hours followingthe onset of symptoms, and thus in manycases prevent severe disability.

Expanding knowledge through shared databases

The competence network has helped tocreate the first nationwide researchgroups devoted to stroke prevention,acute therapy, rehabilitation and health-care. To share their knowledge of imag-ing techniques and epidemiological or genetic data, collaborating teams of scientists and clinicians have set up spe-

cialized stroke databases, based on newlydeveloped common standards. They nowpossess one of the largest databasesbeing used to study genetic factors influ-encing susceptibility to stroke. Mutationsassociated with a high stroke risk havebeen identified in four genes. Such find-ings will eventually be used to identifyhigh-risk individuals and devise more personalized treatment.

Another research group collates and evaluates data from nearly 40,000 strokepatients each year, providing a solid basis for comparing the effectiveness of different treatments on a national scale –another example of expanding knowledgethrough sharing.

Improving healthcare

‘Every minute counts’ after a stroke, asbrain cells begin to die almost immedi-ately. Nevertheless, many stroke patientsseek medical attention too late. A studygroup is looking into the question of whythis is so, and how to avoid this unneces-sary suffering. Their results indicate acurious discrepancy between theory andpractice: Many previous stroke victims failto learn from experience and, althoughthey recognize the symptoms, seek medical attention even later when theyrecur.


www.kompetenznetz-schlaganfall.deNetwork coordinator: Prof. Dr. A. VillringerNeurologische Klinik, Charité,Schumannstrasse 20/21 D-10117 Berlin

Phone: +49 (0) 30/ 4 50 56 00 34Fax: +49 (0) 30/ 4 50 56 09 52E-Mail: [email protected]

Contact: Dipl.-Biol. L. Clevert,Phone: +49 (0) 30/ 4 50 56 01 45E-Mail: [email protected]

Healthcare organizations have beenworking together with clinical andresearch scientists in this BMBF-supported, nationwide competencenetwork since 1999. The aim is to poolthe expertise of the leading researchgroups participating in the network,in addition to improving the flow of information between scientists,physicians and patients. Consequently,more rapid progress in this researchfield should be made and the imple-mentation of research findings inhealthcare practice should be moreeffective. The network’s 29 inter-disciplinary projects seek to optimize identification of high-risk individuals,preventative measures, diagnosis andacute therapy, patient rehabilitationand aftercare.

A stroke results in a sudden loss of function of certain areas in the brain.

The latest MRI techniques improve diagnosis following a stroke.

Stroke patients need efficient help

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www.kompetenznetz-medizin.de

www.kompetenznetz-ahf.de

www.brain-net.net

www.capnetz.de

www.kompetenznetz-ced.de

www.kompetenznetz-demenzen.de

www.kompetenznetz-depression.de

www.kompetenznetz-hepatitis.de

www.kompetenznetz-herzinsuffizienz.de

www.kompetenznetz-hiv.de

www.kompetenznetz-leukaemie.de

www.lymphome.de

www.kinderkrebsinfo.de

www.kompetenznetz-parkinson.de

www.rheumanet.org

www.kompetenznetz-schizophrenie.de

www.kompetenznetz-schlaganfall.de

www.sepnet.de

www.kompetenznetz-vorhofflimmern.de



GEFÖRDERT VOM


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Kompetenznetze In Der Medizin

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