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 info@prisms.org.

Our latest research updates:

Announcing the new PRISMS Clinic and Research Consortium!

PRISMS is pleased to announce the founding of our PRISMS Clinic and Research Consortium (PCRC)! The goals of the new clinic and research consortium are to: Ensure that comprehensive, multidisciplinary evaluation and clinically appropriate treatment, or treatment recommendations and referrals, are available within a reasonable geographic distance for all families; Advance the pace of research, […]

Updates to the SMS Patient Registry

As of September 2020 New Languages! 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. New […]

Telepractice versus in-person speech-language therapy for individuals with Smith-Magenis Syndrome (SMS) – A Pandemic Survey Study

By Christine Brennan, Ph.D. CCC-SLP, University of Colorado Boulder Background Telepractice in speech-language pathology has been around for at least 15 years [1], but due to school and clinic closures during the Covid-19 pandemic more therapy is now being provided via telepractice. Due to possible deficits in voice, speech, language, social communication, and cognitive development […]