Research at PRISMS
RESEARCHING
SMS
RESEARCH AT PRISMS
PRISMS Believes Research Leads to Answers
Research is a fundamental pillar of PRISMS’ support for SMS families. We advance research by building collaborative partnerships with professionals, funding studies that aim to improve the lives of SMS individuals and providing meaningful opportunities for community involvement in research efforts.
Research on SMS is vital to advancing efforts to improve the lives of individuals with this rare syndrome. We hope you will join us in making a difference!
How We Support Research
01
Research Symposium
PRISMS aims to foster interest in Smith-Magenis Syndrome research by hosting a biennial Research Symposium. The PRISMS Research Symposium is the only event of its kind focused on current research related to Smith-Magenis Syndrome. 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 by clicking on the link below.
02
SMS Patient Registry
The Smith-Magenis Syndrome Patient Registry (SMSPR) is one of PRISMS’ most significant research initiatives—a vital partnership between families and researchers designed to advance scientific understanding of Smith-Magenis syndrome (SMS).
This secure, web-based registry enables families worldwide to contribute valuable data and insights about their experiences with SMS. The registry serves as an essential resource for researchers, driving innovation in diagnosis, treatment, and long-term care. Through participation, families play a pivotal role in shaping the future of SMS research and clinical progress.
03
Research Funding
PRISMS is dedicated to advancing research that delivers meaningful benefits to the SMS community. We provide sustained funding to Baylor College of Medicine in support of the SMS Patient Registry and have recently concluded several sponsorships of Summer Scholar research initiatives aimed at fostering early-career scientific engagement in SMS-related studies.
If you have a research project proposal you would like PRISMS to review, please email us at info@prisms.org.
For Patients
For Researchers
Our Latest Research Updates
PRISMS Releases New “Strategies to Address Emotional and Behavioral Challenges in Smith-Magenis Syndrome” Guidebook
PRISMS is pleased to announce the online publication of its first in a series of family-friendly treatment recommendations. This series is designed to provide essential information to parents, caretakers and other professionals who may be providing services to the individual with SMS but who are not SMS experts.
Moving Care of SMS Forward
On December 1, 2020, the Food and Drug Administration (FDA) approved the use of HETLIOZ® (tasimelteon) capsule and liquid formulations for the treatment of adults and children, respectively, with nighttime sleep disturbances associated with Smith-Magenis Syndrome (SMS).
Constipation Treatment Recommendations for SMS
PRISMS is pleased to announce the online publication of its first in a series of family-friendly treatment recommendations. This series is designed to provide essential information to parents, caretakers and other professionals who may be providing services to the individual with SMS but who are not SMS experts.