Tuberous sclerosis

Clinical Research/Studies

Is there clinical research happening on tuberous sclerosis?

There are about 60 studies involving tuberous sclerosis listed on clinicaltrials.gov, a government website that provides regularly updated information about federally and privately supported clinical trials. This is not necessarily an exhaustive list of current research. Current studies are looking at the natural history of kidney problems in tuberous sclerosis; several potential drug therapies; trying to determine if certain gene changes in the TSC1 and TSC2 genes are more likely to cause certain symptoms; evaluating autism and intellectual issues in tuberous sclerosis; and other studies.

For the most up-to-date list, contact clinicaltrials.gov and search for tuberous sclerosis.

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How do I find clinical research on tuberous sclerosis?

How do I find clinical research on tuberous sclerosis?

To learn about ongoing clinical research into tuberous sclerosis, ask a physician who specializes in the disorder. Genetic counselors and medical geneticists are also excellence sources of information about ongoing clinical trials and can offer advice about the pros and cons about participating in such a trial.

Ongoing studies for tuberous sclerosis can also be found on clinicaltrials.gov, a service of the U.S. National Institutes of Health. In Europe, the EU Clinical Trial Register performs a similar service.

Support groups also have information about ongoing clinical trials as well as information and advice about participating in clinical trials. Support groups for tuberous sclerosis include the Tuberous Sclerosis Alliance in the United States, the Tuberous Sclerosis Association in the United Kingdom and the Tuberous Sclerosis Canada Sclerose Tubereuse provide information and support.

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