NMDP has implemented a protocol consent change and is introducing a standardized way to report genetic mutations detected in donor-derived cells.

Historically, the process to report findings has not been outlined and occurs on a case-by-case basis. By standardizing this reporting process, we will now be able to:

  • Respond to the results of next-generation sequencing technology for disease surveillance
  • Notify donors about the process
  • Have donors opt in at workup if they want to be notified about genetic changes of unknown significance
  • The Transplant Medical Services team will notify donors, regardless of opt in status, of any/all medically actionable genetic changes with known significance.

Genetic mutations may be identified during post-donation marrow and/or peripheral blood genetic testing. In such cases, the transplant center is expected to report any genetic mutations found in their recipients that may be donor-derived back to the NMDP. Transplant centers will submit findings through the CIBMTR FormsNet3 application via the Genetic Mutation Report intake form, Form 3004. This form is available as of 1/20/2023 by generating an ‘on-demand’ form. For steps on how to create an on-demand form, please see the ‘Create an Unscheduled Form’ page within the FormsNet3 Training Guide.

The links below provide training on the new Genetic Mutation Reporting process for transplant centers:

On-demand recording link
RISE training module link
Form Instructions can be found HERE

Contact Information

  • For help with how to answer the questions after reviewing the training materials, please reach out to the NMDP Transplant Medical Services team at tms@nmdp.org
  • For questions about potential donor-derived findings, form submissions, or any additional guidance please email geneticmutations@nmdp.org
  • For technical issues regarding this form, please create a CIBMTR Center Support ticket
Last modified: Mar 08, 2024