Project description:The Brain Donation Program at Sun Health Research Institute has been in continual operation since 1987, with over 1000 brains banked. The population studied primarily resides in the retirement communities of northwest metropolitan Phoenix, Arizona. The Institute is affiliated with Sun Health, a nonprofit community-owned and operated health care provider. Subjects are enrolled prospectively to allow standardized clinical assessments during life. Funding comes primarily from competitive grants. The Program has made short postmortem brain retrieval a priority, with a 2.75-h median postmortem interval for the entire collection. This maximizes the utility of the resource for molecular studies; frozen tissue from approximately 82% of all cases is suitable for RNA studies. Studies performed in-house have shown that, even with very short postmortem intervals, increasing delays in brain retrieval adversely affect RNA integrity and that cerebrospinal fluid pH increases with postmortem interval but does not predict tissue viability.

| S-EPMC2493521 | biostudies-other

Princess Margaret Tumour Immunotherapy Program INSPIRE Data Access Committee

Project description:Data Access Committee EGAC00001001158

| EGAC00001001158 | EGA

A mechanism for controlled access to GWAS data: experience of the GAIN Data Access Committee.

Project description:The Genetic Association Information Network (GAIN) Data Access Committee was established in June 2007 to provide prompt and fair access to data from six genome-wide association studies through the database of Genotypes and Phenotypes (dbGaP). Of 945 project requests received through 2011, 749 (79%) have been approved; median receipt-to-approval time decreased from 14 days in 2007 to 8 days in 2011. Over half (54%) of the proposed research uses were for GAIN-specific phenotypes; other uses were for method development (26%) and adding controls to other studies (17%). Eight data-management incidents, defined as compromises of any of the data-use conditions, occurred among nine approved users; most were procedural violations, and none violated participant confidentiality. Over 5 years of experience with GAIN data access has demonstrated substantial use of GAIN data by investigators from academic, nonprofit, and for-profit institutions with relatively few and contained policy violations. The availability of GAIN data has allowed for advances in both the understanding of the genetic underpinnings of mental-health disorders, diabetes, and psoriasis and the development and refinement of statistical methods for identifying genetic and environmental factors related to complex common diseases.

| S-EPMC3617375 | biostudies-literature

Paediatric Brain Tumour Data Access Commitee

Project description:Data Access Committee EGAC00001003170

| EGAC00001003170 | EGA

Ontario Institute of Cancer Research, Data Access Committee

Project description:Data Access Committee EGAC00001000591

| EGAC00001000591 | EGA

Institute for Refractory Cancer Research (IRCR) Data Access Committee

Project description:Data Access Committee EGAC00001000272

| EGAC00001000272 | EGA