Data protection in biomaterial banks for Parkinson's disease research: the model of GEPARD (Gene Bank Parkinson's Disease Germany).
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 Gene Bank Parkinson's Disease 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.
Eggert
Karla
K
Department of Neurology, Philipps-University of Marburg, Marburg, Germany. eggert@med.uni-marburg.de
Wüllner
Ullrich
U
Antony
Gisela
G
Gasser
Thomas
T
Janetzky
Bernd
B
Klein
Christine
C
Schöls
Ludger
L
Oertel
Wolfgang
W
D016494:Computer Security / Q000941:ethics / Q000331:legislation & jurisprudence*; D003219:Confidentiality / Q000941:ethics* / Q000331:legislation & jurisprudence*; D030561:Databases, Nucleic Acid / Q000941:ethics / Q000331:legislation & jurisprudence*; D036281:Genetic Research / Q000941:ethics / Q000331:legislation & jurisprudence; D005838:Genotype; D005858:Germany; D007258:Informed Consent / Q000941:ethics / Q000331:legislation & jurisprudence; D010300:Parkinson Disease / Q000235:genetics*; D010641:Phenotype