Data protection in biomaterial banks for Parkinson's disease research: The model of GEPARD (Gene bank Parkinson's Disease Germany)

✍ Scribed by Karla Eggert; Ullrich Wüllner; Gisela Antony; Thomas Gasser; Bernd Janetzky; Christine Klein; Ludger Schöls; Wolfgang Oertel

• Publisher: John Wiley and Sons
• Year: 2007
• Tongue: English
• Weight: 140 KB
• Volume: 22
• Category: Article
• ISSN: 0885-3185
• DOI: 10.1002/mds.21331

✦ Synopsis

Abstract

Parkinson's disease (PD) is the second most common neurodegenerative disease. Although 10 gene loci have been identified to cause a Parkinsonian syndrome, these loci account only for a minority of PD patients. Large, systematic research programs are required to collect, store, and analyze DNA samples and clinical information to support further discovery of additional genetic components of PD or other movement disorders. Such programs facilitate research into the relationship between genotype and phenotype. The German Competence Network on Parkinson's disease (CNP) initiated the __Ge__ne Bank __Par__kinson's __D__isease Germany (GEPARD), providing an administrative and scientific infrastructure for the storage of DNA and clinical data that are electronically accessible and protective of patient rights. In this article, we offer guidance on how to establish a framework for a clinical genetic data and DNA bank, and describe GEPARD as a model that may be useful to other local, national, and international research groups developing similar programs. © 2006 Movement Disorder Society