15q Clinical Research Network

Data Access Committee

The Data Access Committee One will include one representative (can rotate who) from:

  1. Parent of an individual with Angelman Syndrome
  2. Parent of an individual with Dup15q Syndrome
  3. Angelman Syndrome Foundation
  4. Dup15q Alliance
  5. Global Angelman Registry
  6. Angelman Syndrome Natural History Study (for Natural History Study Data)
  7.  RTI International
    i. Additional members will be added as new datasets are contributed (all contributors to the LADDER will have a seat on the DAC)
    ii. Application, scoring rubric (e.g. community priorities, gaps in the literature, etc), and rules (e.g. embargoed data) to be developed by the DAC
    iii. DAC will be set up like an NIH study section—members will review applications, score them, then discuss with the rest of the committee to make a final decision
    iv. Disagreements that are not resolved via discussion will be decided based on a majority vote.

*Conflicted stakeholders from the DAC will be recused from reviewing applications for their own use. Conflict is determined by DAC bylaws.