The leaders of the study are Dr. Ximena Jordan-Bruno from the University of Pennsylvania. Dr. Martin Carroll from UPenn.

Dr. Amanda Eggen and Dr. Katrin Ericson from RRP are working closely with Dr. Bruno to conduct the study. Three genetic counselors are also part of the study team, and play a role in advising on the project.

Finally, a research coordinator and a data coordinator plays a role to help ensure the study is running smoothly and the data is complete.

All study team members take annual training on how to protect the rights of research participants and ensure your data remains confidential and safe

The Genetic Alliance Institutional Review Board (IRB) is an independent group of individuals who are familiar with ethics and related regulations that ensure protection of rights and privacy research participants.

They are the group who reviewed this study and who will continue to review any changes made into the future. You can learn more here: https://geneticalliance.org/irb or contact them by email at irbadmin@geneticalliance.org.

A committee that includes patients and caregivers, along with clinicians and researchers, dedicated to developing RUNX1-FPD research centered around patients’ defined priorities and preferred outcomes. The RGPC advises RUNX1 Foundation’s related activities including this study.

Yes, the RUNX1 Research Portal on the Matrix platform follows all safety measures available to ensure your data will never be compromised.

Read more about the technology here: www.acrossmatrix.com and its privacy policy here.

You will set up a caregiver account in the RUNX1 Research Portal on Matrix which will allow you to add accounts for each individual and answer questions related to each individual.

Email Akmal Salimov, Akmaljon.Salimov@Pennmedicine.upenn.edu, to notify him.

You will be able to download printable PDF files of your responses to surveys, and are free to share those with your health care teams.

Email Akmal Salimov, Akmaljon.Salimov@Pennmedicine.upenn.edu.

Your data will exist in the system for the entire term of the study.

The study team will request their contact information from you and attempt to obtain their consent to continue participating in future data collection opportunities. Data collection will halt until the time at which they complete their own consent.