As of September 2020
The SMS Patient Registry is now open to participation from individuals who speak Spanish, French, Italian, and German. The research team at Baylor College of Medicine has recently completed translation of the consent and registry instruments into these languages, in addition to the existing English consent and surveys.
Earlier this summer, several new surveys were added to the Patient Registry. These surveys ask questions about general behavioral concerns, as well as food-related behaviors, sleep, speech and language development, and body type. We are excited about this new avenue of research and hope that our SMS community will consider signing up for the registry to help us expand our knowledge of SMS.
Why do we need a registry?
A patient registry will allow researchers to more accurately determine the natural history of Smith-Magenis syndrome by collecting information and making the data available to researchers across the globe. The aim of this registry is to collect as much information as possible from patients and families affected by SMS to accelerate research, which may lead to treatment trials and improved therapeutic options.
Who is eligible to participate?
All individuals with a confirmed diagnosis of Smith-Magenis Syndrome are eligible to participate!
All surveys and questionnaires in the registry can be completed electronically – no travel is needed to participate.
How do I enroll?
Check out our Patient Registry website for more information about the registry and to enroll.