Your proposal will be evaluated based on the NIH criteria of Significance, Approach, and Investigators/Environment, as well as the following:
  • For requests of the ICN database, the study aims must be able to be met using the data elements that are available.
  • There is no overlap with an existing study being conducted within the ICN Learning Network.
  • There is an affiliated IRB that can provide oversight.
  • The Data Sharing Expectations Policy is signed (see link below).


Review Process:
  • Upon submission of a complete package, your proposal documents will be reviewed by at least two assigned Research Committee members and one parent or patient.
  • The proposal will be presented and discussed during a Research Committee Meeting. (This meeting usually takes place on the 2nd Tuesday of each month.)
  • A determination of Approved, Table with revisions, or Decline, will be assigned during the Research Committee Meeting. You will receive an email notification of the determination with supporting comments.

Click here to find research resources such as the Case Report Form, Data Dictionary, Research Change Package, and more.

If you have any questions or issues with the REDCap form, please email

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