Led by the University of Pennsylvania and supported by the RUNX1 Research Program, this initiative invites individuals with RUNX1 familial platelet disorder (RUNX1-FPD), their family members, and non-affected relatives to donate small amounts of blood or bone marrow during routine clinical appointments.

Samples are securely stored and used by approved researchers to study RUNX1-FPD biology, explore early cancer detection methods, improve quality of life, and work toward cancer prevention.

How Participation Works

• Set up an account through the secure online RUNX1 Research Portal.

• Provide your mailing address and the date of an upcoming scheduled blood draw or bone marrow procedure.

• Receive a sample collection kit by mail from the University of Pennsylvania.

• Bring the kit to your clinical appointment and have your provider collect the additional sample.

• After your appointment, simply drop the kit off at a local FedEx using the prepaid packaging provided.

• Return to the RUNX1 Research Portal when you receive any reports from your clinical team (i.e., complete blood count) and provide information from the report to connect with your submitted sample.

• All samples are de-identified to protect participant privacy. Participation is voluntary and there is no direct cost to you.

Learn More

A recorded webinar with the University of Pennsylvania study team explains the goals of the RUNX1 Patient Tissue Bank, who can participate, and how the process works. Click here to watch the webinar recording.

If you have any questions about the study or the participation process, please contact Akmal Salimov: Akmaljon.Salimov@Pennmedicine.upenn.edu.

Together, we are building a powerful research resource to drive progress for the RUNX1-FPD community!