Patient Registry

If you have been diagnosed with RUNX1 FPD/AML, your story is important to us. Please join our patient registry, a natural history database involving less than twenty questions about yourself and your family history. Joining the RUNX1 Registry is an important step in the management and understanding of your disorder. We aim to provide you with exclusive patient benefits that will allow you to become your own best advocate, in turn helping to further RUNX1 FPD/AML research. Your registration will enable us to demonstrate to researchers the prevalence of our disorder in order to garner the necessary attention. Additionally, identifying geographical areas where RUNX1 FPD/AML is more prevalent will be useful information as we develop our clinical care recommendations. Registrants will be notified of patient conferences and have access to educational materials, including state-of-the-art research updates. In future, we hope to provide registrants the ability to choose to take part in relevant clinical trials.

All personal identifiers provided by you are kept confidential and every entry will be given a ‘unique patient identifier’. The RUNX1 Research Program does not, and will not ever, sell or market any data obtained from individuals who join our registry. In this era of patient-derived data informing the direction of medicine, your participation is crucial, and we appreciate it.