PCGC Sharing Plan
Qualified, external researchers (non-B2B, non-ancillary studies) may access the genotype and phenotype datasets submitted and stored at dbGaP. A Data Access Committee (DAC) will oversee access to PCGC data contained in dbGaP. Investigators who wish to access shared data must complete a Data Use Certification, which is reviewed and approved by the DAC. Membership of the DACs will include Federal staff with relevant expertise in areas such as the relevant particular scientific disciplines, research participant protection, and privacy.
Investigators interested in accessing CHD GENES biospecimens should submit a proposal for an ancillary study.
CvDC Sharing Plan
The CvDC will adhere to the NIH Grant Policy on Sharing of Unique Research Resources, including the (LINK HAS BEEN REMOVED) Sharing of Biomedical Research Resources Principles and Guidelines for Recipients of NIH Grants and Contracts issued in December, 1999. All ‘model organisms’ generated by this project will be distributed freely or deposited into a repository/stock center making them available to the broader research community, either before or immediately after publication. If we assume responsibility for distributing the newly generated model organisms, we will fill requests in a timely fashion. In addition, we will provide relevant protocols and published genetic and phenotypic data upon request. Material transfers will be made with no more restrictive terms than in the Simple Letter Agreement (SLA) or the Uniform Biological Materials Transfer Agreement (UBMTA) and without reach through requirements. Should any intellectual property arise which requires a patent, we will ensure that the technology (materials and data) remains widely available to the research community in accordance with the NIH Principles and Guidelines document.