Genbank Parkinson-Krankheit Deutschland

Zusammenfassung

Die Parkinson-Krankheit ist nach der Alzheimer-Krankheit die zweithäufigste neurodegenerative Erkrankung. In den letzten 5 Jahren wurden 11 Genorte und 7 Gene identifiziert, die kausal an der Pathogenese der Erkrankung beteiligt sind. 10 bis 20% des idiopathischen Parkinson-Syndroms (IPS) sind erblich bedingt, in allen anderen Fällen ist die Ätiologie unklar. Um die Erforschung der molekularen Grundlagen der Parkinson-Krankheit zu fördern, hat das Kompetenznetz Parkinson (KNP e. V.) eine Genbank “Genbank Parkinson-Krankheit Deutschland (GEPARD)” aufgebaut.

Die zentrale Biomaterialbank und 4 kooperative Genbanken lagern die DNA-Proben von Patienten und Kontrollpersonen. Die Proben werden von den Mitgliedszentren des KNP gesammelt.

Da die standardisierte Dokumentation aller DNA-Proben in einer zentralen Datenbank gespeichert ist und der Zugang über das Internet erfolgt, muss das KNP besonderen Datenschutz- und Sicherheitsmaßnahmen Rechnung tragen. Daher haben Datenschützer und Wissenschaftler von GEPARD gemeinsam ein Datenschutzkonzept entwickelt, dem die Datenschutzbeauftragten der Länder im September 2004 zugestimmt haben. Für Deutschland war dies die erste datenschutzrechtliche Genehmigung einer bundesweiten Internet-basierten Biomaterialbank.

Summary

Parkinson’s disease (PD) is a common neurodegenerative disorder, second only to Alzheimer’s disease. In the last 5 years 11 gene loci and 7 genes have been identified to cause a Parkinsonian syndrome defining 10 to max. 20% of all patients suffering from PD. In the remaining vast majority of patients the etiology is unknown. To support further detection of genetic components of PD the Competence Network on Parkinson’s disease (CNP e. V.) has established a cooperative DNA-bank. DNA samples of patients and of control persons are collected in the member centers of the CNP and stored in a central and four cooperative DNAbanks.

The unique feature of the Gene Bank Parkinson’s Disease Germany (GEPARD) is the storage of all characterizing DNA sample documentations in a central database system, accessible via Internet. This feature requires special efforts to secure data safety and protection. Therefore the German group of data protection offices of the countries and scientists involved in GEPARD underwent a complex procedure to establish a concept for the data safety and protection of GEPARD and the related clinical information. The concept was approved in July 2004 by the data protection authorities. GEPARD is now the first German biomaterial bank linked to clinical information via Internet with an approved data protection concept.

Schlüsselwörter

Genbank - GEPARD - Biomaterialbank - Datenschutz - Datensicherheit

Keywords

Gene bank - GEPARD - biomaterial bank - data safety - data security

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