KDM5C Registry is now live
In our effort to better understand KDM5C-related disorder, we created the KDM5C Registry: https://redcap.link/KDM5C-registry
Our mission is to improve the lives of children, young adults, and families affected by KDM5C-related disease by helping to fund, coordinate, and guide scientific research that leads to a better understanding of how KDM5C mutations affect them. There is still so much we do not understand about the specifics around KDM5C-related disorder. We aim to gather demographic and clinical information on individuals with KDM5C variants in both a centralized and standard format. This is created to serve the parent, patient, physician, and research communities around the world as we strive for a better understanding of KDM5C on the path to finding potential treatments.
Informed consent and study detail documents can be found on this shared folder: https://www.dropbox.com/sh/gea9cqn3dqif078/AACFUehoXaHOSU8Sjoei3WPKa?dl=0
For questions, email KDM5Cfirstname.lastname@example.org