Process for Applying to Use DFR Data

The following is our process to review and approve research studies interested in the DFR data, to ensure future studies benefit people with DDX3X Syndrome.

  1. The investigator contacts the DFR to explore their research concept by email to
  2. The DDX3X Foundation will set up a call or meeting to discuss the research concept and review the DFR resources and procedures. We provide feedback to the investigator. 
  3. The investigator develops and submits a research proposal (below).
  4. The Research Committee decides whether to approve the proposal based on the review criteria (below). Based on the Research Committee’s decision, there may also be an opportunity for the investigator to revise their initial proposal with feedback.

Research Committee

The DDX3X Foundation Research Committee will be a minimum of a three-person committee. It may consist of members of The DDX3X Foundation’s Scientific Advisory Board, Leadership Advisory Board, Scientific Advisors, and/or members of the DDX3X community.

Review Criteria

When reviewing a DFR research proposal, Research Committee members are asked to consider the extent to which the proposed research meets the following criteria. The Committee recognizes that some of these criteria will not apply to all research proposals.  

  1. Research focuses on issues and concerns that are known or believed to be considered important by people with DDX3X Syndrome.
  2. Research is scientifically rigorous.
  3. If applicable, new data is feasible to collect (for proposals that involve obtaining additional data not already collected via DFR).
  4. Research has the potential to definitively answer an important question.
  5. The willingness of the investigator to publish and share their findings with the broader scientific community.

Data Sharing Policies

The DDX3X Foundation aims to provide its resources readily, meaning that we will work with any investigator, at any institution, anywhere in the world who is conducting valid research that is in alignment to our mission of finding treatment and a cure for DDX3X Syndrome.