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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Stiff person syndrome


Other Names for this Disease

  • Morsch Woltman syndrome
  • SPS
  • Stiff man syndrome
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

A loved one has been diagnosed with stiff person syndrome. How can I learn more about treatments and clinical trials?

Our Answer

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

What is stiff person syndrome?

Stiff person syndrome is a rare neurological disorder with features of an autoimmune disease. It affects twice as many women as men. It is frequently associated with other autoimmune diseases such as diabetes, thyroiditis, vitiligo, and pernicious anemia[1].  Symptoms may include muscle stiffness in the trunk and limbs, heightened sensitivity to noise and touch, and emotional distress which can set off muscle spasms and cause falls. Treatment may involve high-dose diazepam, anti-convulsants, or intravenous immunoglobulin.[1]
Last updated: 3/15/2011

What treatment is available for stiff person syndrome?

People with stiff person syndrome often respond to high doses of diazepam and several anti-convulsants, including gabapentin and tiagabine. A recent study funded by the National Institute of Neurological Disorders and Stroke (NINDS) demonstrated the effectiveness of intravenous immunoglobulin (IVIg) treatment in reducing stiffness and lowering sensitivity to noise, touch, and stress in people with stiff person syndrome. See the information below to learn how to obtain more details about the results of this study.

You can also contact NINDS for information on stiff person syndrome.

NIH Neurological Institute
P.O. Box 5801
Bethesda, MD 20824
Toll-free: 800-352-9424
Phone: 301-496-5751
TTY: 301-468-5981
E-mail form: http://www.ninds.nih.gov/contact_us.htm  
Web site: http://www.ninds.nih.gov/  
Last updated: 10/8/2009

How can I learn about clinical trials involving stiff person syndrome?

The National Institute of Neurological Disorders and Stroke (NINDS) has completed a clinical trial entitled 'Intravenous Immunoglobulin (IVIg) for the Treatment of Stiff-Man Syndrome (SMS)'. The purpose of this study was to determine the effectiveness of intravenous immunoglobulin (IVIg) in the treatment of stiff person syndrome. Through this study, the researchers may have discovered information pertinent to your particular case. Further information about this study can be accessed through ClinicalTrials.gov. To read about this study, visit the hyperlink below. After you click on the study, review its information to determine if it provides you with useful information.
http://www.clinicaltrials.gov/ct/show/NCT00001550?order=3 

To locate information resulting from the completed study entitled 'Intravenous Immunoglobulin (IVIg) for the Treatment of Stiff-Man Syndrome (SMS)' (study ID numbers 960062; 96-N-0062; NLM Identifier NCT00001550), you can either e-mail or call the National Library of Medicine (NLM) Customer Service. Include the title of the study, the study ID number, and the NLM Identifier, and a librarian at NLM can assist you in searching the medical literature for published results on the completed clinical trial.

National Library of Medicine Customer Service
Toll-free: 888-346-3656
E-mail: custserv@nlm.nih.gov

The U.S. 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. There are currently no studies recruiting new participants. To find trials in the future, click on the link below and use 'stiff person' as your search term. 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
 
You can also contact the Patient Recruitment and Public Liaison 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 if there are any other trials for which you may be eligible.

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

If your loved on is interested in enrolling in a clinical trial, he or she can find helpful general information on clinical trials on the Web site of the Office of Rare Diseases (ORD), part of the National Institutes of Health.
http://rarediseases.info.nih.gov/html/resources/ct-info-patient.html

A tutorial about clinical trials that can also help answer your questions can be found at the following link from the National Library of Medicine: http://www.nlm.nih.gov/medlineplus/tutorials/cancerclinicaltrials/htm/lesson.htm

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 also listed on these ORD Web pages.
http://rarediseases.info.nih.gov/Resources.aspx?PageID=8  
Last updated: 10/8/2009

References
Other Names for this Disease
  • Morsch Woltman syndrome
  • SPS
  • Stiff man syndrome
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.