The National Marrow Donor Program® (NMDP) / Be The Match® 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 / Be The Match. 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:
- For help with how to answer the questions after reviewing the training materials, please reach out to the NMDP / Be The Match Transplant Medical Services team at email@example.com.
- For questions about potential donor-derived findings, form submissions, or any additional guidance please email firstname.lastname@example.org
- For technical issues regarding this form, please create a CIBMTR Center Support ticket via https://nmdp.service-now.com/csm.