Data Access

There are three levels of data access provided by the ASXL Registry and Biobank:

  • Level 1: This is will be provided for families, clinicians, or researchers to preview ASXL Registry and Biobank content and data elements through the data dashboard. This level will be free and accessible via the REACH website here. Our research team is in the process of creating this level and it will be available as soon as possible.

  • Level 2: This level provides de-identified datasets for researchers to use in statistical analysis for pre-clinical explorations, publications, presentations, or grant preparations. Level 2 access will be reviewed by the ASXL Steering Committee. IRB/ethical board approval and/or a signed data use agreement will be required prior to release of any data. Apply for level 2 access via the application form here.

  • Level 3: This level is designed to support recruitment efforts for clinical trials or other research studies. All level 3 applications will be reviewed by the Steering Committee. Evidence of IRB approval will be required prior to the distribution of recruitment material. Researchers interested in using the ASXL Registry and Biobank as a mechanism for recruitment or for survey development or distribution should complete the level 3 application here.

Review of Requests

An email will be automatically sent to the ASXL-CHROMATIN-REGISTRY@mednet.ucla.edu when a REDCap form is completed. Drs. Bianca Russell and Wen-Hann Tan will initially review the request and can approve the request without committee approval. They may not deny requests without committee approval. They will determine whether approval can be completed over email or if a meeting is needed. All members will be included, with a minimum of one PI, two additional science members, and one ASXL community member. All requests will be reviewed to determine feasibility and appropriate validation/use within 30 days. Requestors will be notified in writing of the committee’s approval or denial. Additional information may be requested to fully consider the request.

 

Approval of Requests

Prior to the release of data for approved requests, depending on the use and requirements for the data request, the requester may be asked to provide appropriate documentation including:

•    IRB approval or exemption

•    Data Use Agreement (DUA) and/or Material Transfer Agreement (MTA)

Additional information on how to submit DUAs and MTAs will be provided in accordance with UCLA policies and practice.

 

Authorship:

Dr. Bianca E Russell will be included as an author on publications resulting from Registry and Biobank data, as well as other collaborators on a case-by-case basis. Researchers using data or biological samples resulting in publication will agree to acknowledge the Registry and Biobank with the following statement:

“We would like to acknowledge the ASXL Chromatin Registry and Biobank for their contribution of data to this study and thank you to the ASXL families who have contributed data and/or biologic samples.”