Eligibility to access data

 

Permitted users

  • APPD LEARN members are permitted to obtain data from the repository at no charge, subject only to scientific and IRB approval discussed below.
  • APPD members who are not members of LEARN may request access to repository data. These requests will be considered by the APPD LEARN Director and APPD LEARN Advisory Board, who will be responsible for determining any charges associated with providing repository data and any additional terms of use
  • Investigators not associated with APPD may request access to repository data. These requests will be considered by the APPD LEARN Director and APPD LEARN Advisory Board, who will be responsible for determining any charges associated with providing repository data and any additional terms of use.

Scientific and budgetary approval

All data requests must include a summary of the data requested, research question to be answered by the data, and planned analyses. Data requests for projects that will involve additional data collection should explain whether and how newly collected data will be provided back to APPD LEARN; proposals that do not plan to share their data will be disadvantaged in review. APPD LEARN will provide a form for these data requests.

Requests received will be reviewed by the APPD LEARN Director for scientific merit and cost to APPD LEARN of providing data, and must be approved before data will be released. Requests that are denied may be appealed to the APPD LEARN Advisory Board, whose recommendations are binding and final.

IRB oversight

Because data maintained in APPD LEARN are not identifiable, use of APPD LEARN data by investigators who did not collect the data or interact with the subjects is likely to constitute research on “persons” rather than “human subjects”. In many institutions, however, investigators are required to obtain from their IRBs a determination that their proposed use of data does not constitute human subjects research. Investigators are responsible for satisfying their local requirements prior to obtaining and analyzing data.