Registry
The MHE Learning System (MHELS) is dedicated to improving the lives of people with MHE through collaboration and shared learning.
The MHE Learning System (MHELS), in partnership with the National Organization for Rare Disorders (NORD®), is developing the MHE Learning System Registry, a person
-centered, longitudinal registry dedicated to Multiple Hereditary Exostoses (MHE).
While important advances have been made to advance our understand of MHE, many important questions remain unanswered. We still do not know why disease severity varies so dramatically between individuals, how MHE progresses throughout adulthood, or which factors predict long-term outcomes. The MHE community also has many questions about potential non orthopedic symptoms and manifestations of MHE.
The MHE Learning System Registry was created to help answer those questions.
By collecting real-world information directly from individuals and families affected by MHE, the registry aspires to provide researchers, clinicians, and patient advocates with the data needed to better understand the natural history of the disease, improve standards of care, identify priorities for future research, and accelerate the development of new treatments.
We are proud to share that we are National Organization for Rare Disorders (NORD) Members! This milestone reinforces our commitment to supporting the MHE community and connects us with a larger network dedicated to awareness, advocacy, and meaningful resources for rare diseases.
