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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Smith-Magenis syndrome


Other Names for this Disease
  • Chromosome 17p11.2 deletion syndrome
  • SMS
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.


Your Question

My adult son was recently diagnosed with Smith-Magenis. My son and others seem to crave caffeine and will go to all kinds of lengths to get it.  Do people with Smith-Magenis crave caffeine?  

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

Do people with Smith-Magenis crave caffeine?

After extensive research through our available resources, we have not been able to locate information concerning caffeine cravings associated with Smith-Magenis syndrome. Because Smith-Magenis syndrome is so rare, there has been limited research into long-term behavioral patterns of the disorder. Additional research may identify new behavioral patterns that develop as people with Smith-Magenis syndrome get older.
Last updated: 5/25/2011

How can I find out if people with Smith-Magenis have food cravings?

Support groups are a networking system where parents may have observed the same behavior pattern with caffeine. The following organizations provide information and support for families affected by Smith-Magenis syndrome. 
 
Parents and Researchers Interested in Smith-Magenis Syndrome (PRISMS), Inc.
21800 Town Center Plaza
Suite #266A-633
Sterling, VA 20164
Telephone: 972-231-0035
Fax: 972-499-1832
Web site: http://www.prisms.org

Madisons Foundation
P.O. Box 241956
Los Angeles, CA 90024
Telephone: 310-264-0826
Fax: 310-264-4766
E-mail: getinfo@madisonsfoundation.org
Web site: http://www.madisonsfoundation.org
Last updated: 5/25/2011

Where can I find out more about ongoing research with Smith-Magenis?

The National Institutes of Health, through the National Library of Medicine, developed ClinicalTrials.gov to provide patients, family members, and members of the public with current information on clinical research studies. Click on the link below to view a list of studies involving Smith-Magenis syndrome. After you click on a study, review its 'eligibility' criteria to determine its appropriateness. Use the study’s contact information to learn more. Check this site often for regular updates.
http://www.clinicaltrials.gov/ct2/results?cond=Smith+Magenis+syndrome

You can also contact the Patient Recruitment and Public Liaison (PRPL) Office at the National Institutes of Health (NIH). We recommend calling the toll-free number listed below to speak with a specialist, who can help you determine eligibility for any clinical trials.

Patient Recruitment and Public Liaison Office (PRPL)
NIH Clinical Center
Bethesda, Maryland 20892-2655
Toll-free: 1-800-411-1222
Fax: 301-480-9793
E-mail: prpl@mail.cc.nih.gov
Web site:  http://clinicalcenter.nih.gov/

If you are interested in enrolling in a clinical trial, you can find helpful general information on clinical trials at the following ClinicalTrials.gov Web page.
http://clinicaltrials.gov/ct2/info/understand

Resources on many charitable or special-fare flights to research and treatment sites and low-cost hospitality accommodations for outpatients and family members, as well as ambulance services, are listed on the Web site of the Office of Rare Diseases Research (ORDR), part of the National Institutes of Health.
http://rarediseases.info.nih.gov/Resources.aspx?PageID=8
Last updated: 5/25/2011