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NIH to Host Data from MJFF-Funded Parkinson's GWAS, Agrees to Support Future 'Orphan' Data Sets

NEW YORK (GenomeWeb News) – The National Institutes of Health said today that it will host data from a genome-wide association study focused on Parkinson’s disease and funded in part by the Michael J. Fox Foundation for Parkinson’s Research.
The National Human Genome Research Institute and the National Center for Biotechnology Information have released the data through dbGaP, the database of Genotypes and Phenotypes.
The study was conducted by researchers at the Mayo Clinic and Perlegen Sciences and funded by MJFF’s Linked Efforts to Accelerate Parkinson’s Solutions, or LEAPS, initiative.
Because the project was primarily supported by a private foundation, NIH said that it is considered an “orphan” data set because it doesn’t meet NIH requirements for access to GWAS data, which can contain details that could be used to identify study volunteers and potentially violate their privacy.
NIH requires that projects submitting GWAS data remove identifying information, such as names and social security numbers. In addition, researchers who want to use the data must ask for permission and agree to certain limitations in order to ensure patient privacy. These requests are reviewed by a data access committee, or DAC. While several NIH institutes have DACs, few private foundations do.
In this case, NHGRI’s data access committee agreed to “adopt” the study and manage the data access approval process, NIH said.
“Until now, the individual-level data from this study had been available only to a few researchers,” Teri Manolio, director of the NHGRI Office of Population Genomics, said in a statement. “This is the first orphan data set NHGRI is adopting to make public through NCBI, but it certainly will not be the last.”
NIH said that NHGRI’s DAC will manage data access for all GWAS studies submitted to dbGaP that are not associated with other NIH institutes, “including studies submitted by corporate entities.”
The Mayo-Perlegen LEAPS Collaboration is the second dataset on Parkinson’s disease available through dbGaP. The first was the NINDS-Genome-Wide Genotyping in Parkinson’s Disease: First Stage Analysis and Public Release of Data, which is available through dbGaP here.

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