To solicit PRISMS families to participate in active studies via the website, PRISMS social media, and/or newsletter, we ask that you complete the PRISMS Research Protocol Request Form and submit to Emily Fields, Executive Director, at This email address is being protected from spambots. You need JavaScript enabled to view it..


Vanda Pharmaceuticals - Smith-Magenis Syndrome Patient Registry

Sign up to stay informed on the latest updates regarding Smith-Magenis Syndrome (SMS)and sleep disturbances.

The registry connects you with information about future research opportunities and shares information about sleep problems associated with SMS. You will also have an opportunity to sign up to receive helpful tools, learn about resources, and be invited to special educational events.

To learn more, please visit: www.SMSVandaRegistry.com, or call 855-798-2632.


SMS IEP Research Study

The SMS IEP Research Study team conducts research in the Department of Speech, Language, and Hearing Sciences at the University of Colorado Boulder. Our current study aims to gather and collect data from parents and IEPs in order to better understand what speech-language services, therapies, and treatments are being provided to children diagnosed with Smith-Magenis Syndrome (SMS) at various schools across the nation.
 
WHO IS INVITED TO PARTICIPATE?

We are looking for parents of children with a confirmed diagnosis of SMS.
 
WHAT TO EXPECT:

Participants who decide to participate will be asked to:

  • Complete a survey pertaining to your child's speech-language services and abilities
  • Submit your child's Individualized Education Plan (IEP)

If you are interested in learning more about the study and to see if your child is eligible to participate, please send an email to This email address is being protected from spambots. You need JavaScript enabled to view it. or call the Primary Investigator, Christine Brennan, PhD, CCC-SLP, at 303-492-4736.

IRB # 16-0166


Study of Dental Pulp in SMS Individuals

Dr. Lawrence T. Reiter at the University of Tennessee Health Science Center in Memphis, TN, is conducting a research study to determine if neurons can be grown from the dental pulp of individuals with various neurogenetic syndromes including Smith-Magenis syndrome. Participants will be required to submit a genetics report describing their neurogenetic syndrome or control status. Dr. Reiter will provide a tube of cell growth solution and a return package to you at no cost.

Should you agree to participate you will only need to provide a fresh tooth specimen, most likely one that fell out on its own. Teeth must arrive at Dr. Reiter’s laboratory no more than 48hrs after the time they came out of the mouth and in the special media provided.

For more information on how to participate, please contact Dr. Reiter directly by e-mail: This email address is being protected from spambots. You need JavaScript enabled to view it..


Clinical Study by Vanda Pharmaceuticals

A new clinical study is investigating circadian rhythms and sleep disturbances in people with Smith-Magenis Syndrome to guide the development of a possible treatment.

Your child or dependent may qualify if all three criteria are met:

  • they have Smith-Magenis Syndrome
  • they have sleeping problems
  • they live on the East Coast

Qualified individuals will be compensated for their time and effort. Transportation will be provided at no cost.

For more information contact This email address is being protected from spambots. You need JavaScript enabled to view it. or call toll-free: 844-366-2424.


Microdeletion Syndromes Research Study

Do you have a child with Smith-Magenis syndrome? If yes, please consider helping us in important research on microdeletion syndromes. Natera is a genetic testing lab that is developing a non-invasive prenatal screening test (done on a sample of mother's blood during pregnancy) for specific microdeletions including those that cause Smith-Magenis syndrome. We are requesting blood samples from children or adults with Smith-Magenis syndrome and their parents; these samples will help us in the research needed to develop this screening test. If you would like to participate, we are asking for the following:

  • A copy of your child’s microarray results confirming the presence of the SMS microdeletion
  • Blood samples on yourself and your child (and your child’s father, if available)

You will be compensated $100 each for your participation and $50 for your child's participation. It's only with help from families like yours that earlier diagnosis can become a reality.

Call research at Natera at 877-476-4743, x446, or email This email address is being protected from spambots. You need JavaScript enabled to view it. if you are interested and would like to know more.

This study is also listed on Clinical Trials.gov:

http://www.clinicaltrials.gov/ct2/show/NCT02109770?term=NCT02109770&rank=1