PRISMS believes research leads to answers

A core pillar of PRISMS service for SMS families is “research.” We work to promote research by fostering partnerships with professionals, sponsoring research with a focus on positively impacting the lives of SMS families, and offering opportunities for you to get involved in research.

Research in SMS is vital for us to move the dial forward on improving the lives of individuals with this rare disease. We hope you will join us in making a difference!

How we support research

Research Symposium

PRISMS aims to foster interest in Smith-Magenis Syndrome research by hosting a biennial Research Symposium. These symposiums gather interested researchers from across the world to present their findings and discuss the future of SMS research. Read about our most recent research symposium here.

The SMS Patient Registry

One of PRISMS landmark research initiatives is the SMS Patient Registry (SMSPR), a collaboration between families and researchers that will improve our understanding of SMS. This electronic registry allows families from around the world to share information about their journey with SMS and provides an important source of information for researchers interested in studying SMS.

Research Funding

PRISMS is committed to supporting research projects that we believe will have a positive impact on our community. We provide ongoing funding to Baylor College of Medicine to support the PRISMS Patient Registry and have recently completed funding a Post-Doctoral Fellowship at the University of Michigan.

If you have a project proposal you would like PRISMS to review, please email us at

Our latest research updates:

PRISMS Supports SMS SibShop Study

By Michelle Larscheid, Program Coordinator PRISMS is excited to be funding Austin Burns, a 4th-year clinical psychology doctoral student at Saint Louis University, to work on developing an intervention for adolescent siblings of individuals with SMS. Dr. Rebecca Foster, a pediatric psychologist at St. Louis Children’s Hospital and PRISMS Professional Advisory Board Member, is serving […]

Birt-Hogg-Dubé Symptoms in Smith-Magenis Syndrome: Survey Results

Brenda Finucane, MS, CGCGeisinger Autism & Developmental Medicine Institute, Lewisburg, PA Thanks to strong participation by families in the PRISMS community, my colleagues and I completed a research survey on Birt-Hogg-Dubé syndrome (BHD) symptoms in people with SMS, and the results were recently published in the American Journal of Medical Genetics. BHD is a rare, […]

PRISMS Welcomes New Professional Advisory Board Members

PRISMS Professional Advisory Board is comprised of some of the world’s foremost experts on Smith-Magenis Syndrome in a wide range of disciplines including speech and language, neurology, psychology, behavior, genetics and more. We are very excited to expand our professional network and welcome two new members to our Professional Advisory Board! Joining our PAB are […]