The RUNX1 Data Hub gathers information directly from patients on a wide range of symptoms and experiences, including things that may or may not be related to RUNX1-FPD. Many of these questions were added because patients asked: “I wonder if this could be connected to my RUNX1 variant?”

Collecting this information helps us look for patterns worth exploring further. At the same time, the Data Hub also tracks well-established, foundational features of RUNX1-FPD, such as low platelet counts, easy bruising, mucosal bleeding (e.g. gum bleeding), and platelet function defects, which are grounded in peer-reviewed research.

Together, these two types of data help us build the most complete picture possible of life with RUNX1-FPD.

As of November 30, 2025, our RUNX1 Data Hub community includes:

• 72 participants (50% female) from 45 families

• 25 are also enrolled in the RUNX1-FPD Tissue Bank

• Average age: 39 years (range: 3 to 79 years)

• 60 participants with confirmed RUNX1 variants (classified as pathogenic, likely pathogenic, or VUS)

• 56 with near-complete data represented below