5,000
Participants
Start Date
January 31, 2016
Primary Completion Date
December 31, 2050
Study Completion Date
December 31, 2050
Phlebotomy
Participants may elect to submit a blood sample to the Biosample Repository.
Buccal (cheek) swab
Participants may elect to submit a buccal swab sample to the Biosample Repository.
Genetic Testing
Biosamples may be processed and analyzed for genetic variants using whole genome sequencing (WGS) or other sequencing methods. Participants whose samples are processed in this manner may be contacted and provided the option to receive TSC1 or TSC2 genetic variant results by opting in using Consent to Return of Genetic Results Form. Participants will be offered a one-time genetic counseling session to review their results, free of charge. CLIA-certified, TSC1 or TSC2 genetic variant results will be returned to participants who opt in to receive such results. Additionally, negative results and results not able to be clinically certified will also be offered to participants with a one-time genetic counseling session to review their results, free of charge using the Return of Genetic Research Results Template Letter. CSS will be responsible for informing clinic participants that their samples have been sequenced and offer to connect participant to the TSC Alliance for further information.
Tissue donation after routine clinical procedure
Participants may elect to submit a tissue sample to the Biosample Repository following a medical procedure.
RECRUITING
TSC Alliance, Silver Spring
RECRUITING
Washington University in St. Louis, St Louis
RECRUITING
Texas Childrens Hospital Baylor College of Medicine, Houston
RECRUITING
University of California Los Angeles, Los Angeles
RECRUITING
University of Alabama Birmingham, Birmingham
ACTIVE_NOT_RECRUITING
Loma Linda University Children's Hospital, Loma Linda
SUSPENDED
Jack & Julia Center for TSC, Oakland Children's Hospital and Research Center, Oakland
ACTIVE_NOT_RECRUITING
The Children's Hospital, Denver
RECRUITING
Nicklaus Children's Hospital, Miami
ACTIVE_NOT_RECRUITING
Chicago Comer Children's Hospital Neurogenetic Clinic, University of Chicago, Chicago
RECRUITING
University of Iowa Hospitals and Clinics, Iowa City
RECRUITING
Boston Children's Hospital, Boston
RECRUITING
Massachusetts General Hospital, Boston
RECRUITING
Minnesota Epilepsy Group, Roseville
RECRUITING
New York University Medical Center, New York
RECRUITING
Cincinnati Children's Hospital Medical Center, Cincinnati
RECRUITING
Cleveland Clinic Foundation, Cleveland
ACTIVE_NOT_RECRUITING
University of Pennsylvania Medical Center, Philadelphia
RECRUITING
Le Bonheur Children's Hospital, Memphis
RECRUITING
Scottish Rite Hospital for Children, Dallas
RECRUITING
Memorial Hermann-Texas Medical Center (University of Texas Houston), Houston
RECRUITING
Children's National Medical Center, Fairfax
RECRUITING
Centre Hospitalier de L'Université de Montréal (Chum), Montreal
RECRUITING
Sainte-Justine Université de Montréal, Montreal
National Tuberous Sclerosis Association
OTHER