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Study identifier: NCT00001975 Synced from ClinicalTrials.gov · July 29, 2026
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Study of Skin Tumors in Tuberous Sclerosis

Condition: Tuberous Sclerosis  ·  Sponsor: National Heart, Lung, and Blood Institute (NHLBI)

PhaseN/A
Planned participants400
Who can joinAll sexes, 18 Years to 90 Years
Healthy volunteersNo

About this study

Tuberous sclerosis is a rare, hereditary disease in which patients develop multiple tumors. Although not cancerous, the tumors can affect various organs, including the heart, lungs, kidneys, skin, and central nervous system, with serious medical consequences. The severity of disease varies greatly among patients, from barely detectable to fatal. This study will investigate what causes skin tumors to develop in patients with this disease. Patients with tuberous sclerosis 18 years and older may enroll in this study. Participants will undergo a medical history and thorough skin examination by a dermatologist. Those with skin tumors will be asked to undergo biopsy (tissue removal) of up to eight lesions, under a local anesthetic, for research purposes. The biopsies will all be done the same day. The tissue samples will be used for: examination of genetic changes, measurement of certain proteins and other substances, and growing in culture to study the genetics of tuberous sclerosis.

This description comes directly from the study's public registry record.

Talk to the study team

Tatyana A Worthy, R.N.  ·  (301) 827-1376  ·  worthyt@mail.nih.gov

Joel Moss, M.D.  ·  (301) 496-1597  ·  mossj@nhlbi.nih.gov

Always discuss trial participation with your own doctor first.

Locations (1)

National Institutes of Health Clinical CenterBethesda, Maryland, United StatesRecruiting

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Source record: clinicaltrials.gov/study/NCT00001975