IDefine has partnered with Rare-X to drive a data collection program for Kleefstra Syndrome and other rare neurodevelopmental disorders. The Rare-X platform enables the gathering, structuring and sharing of critical patient data at scale, that will accelerate diagnosis, disease understanding, and development of future treatments and cures.
For patient and patient families, participating in this effort is one of the most important and critical efforts you can do. Patient reported outcomes (PRO) derived from these surveys will supplement clinical reported data to create a robust and deep data collection set for Kleefstra Syndrome.
Join in today by clicking the button below!