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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Proteus syndrome


Other Names for this Disease
  • Hemihypertrophy and macrocephaly
  • Partial gigantism of hands and feet, nevi, hemihypertrophy, macrocephaly
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Your Question

How can I learn about research opportunities at the National Institutes of Health (NIH) that are enrolling children with Proteus syndrome?

Our Answer

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

How can I learn about research opportunities at the National Institutes of Health (NIH) that are enrolling children with Proteus syndrome?

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 is a clinical trial titled "Study of Proteus Syndrome and Related Congenital Disorders" that may be of interest to you. Click here to view the study abstract. Review the "eligibility" criteria to determine its appropriateness. Use the study’s contact information to learn more.

You can check this site for regular updates. To do so, visit ClinicalTrials.gov and use "Proteus syndrome" as your search term.

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 if your child is eligible for any clinical trials.

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

ClinicalTrials.gov provides a helpful guide for information about participating in a clinical trial. Resources for travel and lodging assistance are listed on the National Center for Advancing Translational Sciences Office of Rare Diseases Research (NCATS-ORDR) website, part of the National Institutes of Health (NIH).

  
Last updated: 3/10/2014