4 completed, 4 unknown, 2 enrolling by invitation, 2 withdrawn. 14 Not applicable.
| Phase | Trials | Status |
|---|---|---|
| Not applicable | 14 | Completed 4, Unknown 4, Enrolling by invitation 2, Withdrawn 2, Active not recruiting 1, Recruiting 1 |
Follow Tuberous Sclerosis: new trials by email Literature Review of Tuberous Sclerosis trials Research Report on Tuberous Sclerosis
Tick up to 5 trials to compare them side by side (eligibility, arms, endpoints, adverse events) in a Literature Matrix.
| Trial | Phase | Status | Sponsor | Enrollment | Start | Updated |
|---|---|---|---|---|---|---|
| A Smart Phone Application to Improve Adoption of the 2024 Kidney Disease Improving Global Outcomes (KDIGO) Chronic Kidney Disease (CKD) Guidelines Use of an electronic digital Application - Chronic Kidney Disease, Proteinuria | Not applicable | Recruiting | St. James's Hospital, Ireland | 80 | 2026-01-14 | 2026-05-01 |
| TANDem-2: Closing the Gap to Interventions for TAND Well-Beans for Caregivers Program - Adult Caregivers of Individuals With TSC, Tuberous Sclerosis Complex (TSC) | Not applicable | Enrolling by invitation | Vrije Universiteit Brussel | 30 | 2025-07-15 | 2025-09-22 |
| Web Intervention for Parents of Youth With Genetic Syndromes (WINGS) Functional Behavioral Training (FBT), Positive Parenting Strategies-Treatment as Usual - Telomeric 22Q13 Monosomy Syndrome, Tuberous Sclerosis | Not applicable | Active not recruiting | Rush University Medical Center | 79 | 2023-09-15 | 2026-09-18 |
| Remote Assessment and Intervention for Behavior Problems in Kids With TSC Parent-Child Interaction Therapy (PCIT) - Tuberous Sclerosis | Not applicable | Completed | University of California, Los Angeles | 101 | 2022-08-01 | 2026-03-18 |
| KidneYou - Innovative Digital Therapy KidneYou APP - Chronic Kidney Diseases, Diabetes | Not applicable | Completed | Advice Pharma Group srl | 210 | 2022-07-18 | 2024-11-06 |
| Acceptance and Commitment Therapy in Tuberous Sclerosis Complex Acceptance and Commitment Therapy (ACT) - Tuberous Sclerosis Complex | Not applicable | Unknown | University Hospitals Bristol and Weston NHS Foundation Trust | 15 | 2021-08-12 | 2024-02-14 |
| TSC Remote Assessment and Intervention JASPER - TSC | Not applicable | Completed | University of California, Los Angeles | 54 | 2020-10-31 | 2024-10-30 |
| Parent and Infant Inter(X)Action Intervention (PIXI) Parent-Infant Inter(X)action Intervention (PIXI) - Fragile X Syndrome, Angelman Syndrome | Not applicable | Enrolling by invitation | RTI International | 120 | 2018-11-30 | 2026-07-13 |
| Use of a Tonometer to Identify Epileptogenic Lesions During Pediatric Epilepsy Surgery Intra-operative brain tonometry - Epilepsy, Focal Cortical Dysplasia | Not applicable | Withdrawn | University of California, Los Angeles | 2018-07-16 | 2023-10-10 | |
| Turmeric as Treatment in Epilepsy Turmeric - Epilepsy, Dravet Syndrome | Not applicable | Withdrawn | NYU Langone Health | 2018-03-01 | 2018-04-30 | |
| JASPER Early Intervention for Tuberous Sclerosis JASPER - Tuberous Sclerosis | Not applicable | Unknown | University of California, Los Angeles | 64 | 2017-10-24 | 2020-11-06 |
| Characterizing Sleep Disorders in Children and Adults With Tuberous Sclerosis Complex (TSC) Questionnaires, electroencephalogram (EEG), polysomnography - Sleep Disorder | Not applicable | Unknown | Universitair Ziekenhuis Brussel | 60 | 2017-09-27 | 2018-10-17 |
| Early Behavioral Intervention to Improve Social Communication Function in Infants With Tuberous Sclerosis Complex JASPER - Tuberous Sclerosis Complex | Not applicable | Completed | University of California, Los Angeles | 8 | 2015-09-01 | 2026-07-23 |
| Long-term, Prospective Study Evaluating Clinical and Molecular Biomarkers of Epileptogenesis in a Genetic Model of Epilepsy - Tuberous Sclerosis Complex epilepsy early diagnosis protocol - TSC, Tuberous Sclerosis Complex | Not applicable | Unknown | Sergiusz Jozwiak | 100 | 2013-11-01 | 2014-04-04 |
Epilepsy (4) · Angelman Syndrome (2) · Fragile X Syndrome (2) · Renal Insufficiency, Chronic (2) · Rett Syndrome (2) · Telomeric 22q13 Monosomy Syndrome (2) · Albuminuria (1) · Autistic Disorder (1) · Brain Neoplasms (1) · Child Development Disorders, Pervasive (1) · Chromosome 15q, partial deletion (1) · Creatine deficiency, X-linked (1) · Developmental Disabilities (1) · DiGeorge Syndrome (1)
Congenital Abnormalities (14) · Congenital, Hereditary, and Neonatal Diseases and Abnormalities (14) · Genetic Diseases, Inborn (14) · Hamartoma (14) · Heredodegenerative Disorders, Nervous System (14) · Malformations of Cortical Development (14) · Malformations of Cortical Development, Group I (14) · Neoplasms (14) · Neoplasms, Multiple Primary (14) · Neoplastic Syndromes, Hereditary (14) · Nervous System Diseases (14) · Nervous System Malformations (14) · Neurocutaneous Syndromes (14) · Neurodegenerative Diseases (14) · Central Nervous System Diseases (6)
Activator Appliances (3) · Acceptance and Commitment Therapy (1) · Actigraphy (1) · Curcumin (1) · Surveys and Questionnaires (1)
University of California, Los Angeles (5) · Advice Pharma Group srl (1) · NYU Langone Health (1) · RTI International (1) · Rush University Medical Center (1) · Sergiusz Jozwiak (1) · St. James's Hospital, Ireland (1) · Universitair Ziekenhuis Brussel (1) · University Hospitals Bristol and Weston NHS Foundation Trust (1) · Vrije Universiteit Brussel (1)
United States (9) · Belgium (2) · Italy (2) · Australia (1) · Austria (1) · Canada (1) · Czechia (1) · France (1) · Germany (1) · Ireland (1) · Netherlands (1) · Poland (1) · United Kingdom (1)
Alessandra Pereira,, PhD, MD (1) · Alessandro Flavio Ferri (1) · Anna Jansen, MD, PhD (1) · Anna Jansen, PhD, MD (1) · Anne Wheeler, PhD (1) · Aria Fallah, MD (1) · Donal Sexton, MB BCh BAO BSc, MRCPI, MD, PhD (1) · Magda Nunes, PhD, MD (1) · Manisha Holmes, MD (1) · Nicole McDonald, PhD (1) · Oliviero Bruni, PhD, MD (1) · Paolo Curatolo, PhD, MD (1) · Petrus J de Vries, MD PhD (1) · Sam Amin, MBCHB MSc PhD (1) · Seriusz Jozwiak, Md, PhD (1)
PMID 19141364, PMID 22113127, PMID 23732715, PMID 27222591, PMID 29797247, PMID 31237569, PMID 31912454, PMID 31969108, PMID 39625912, PMID 41738544, PMID 42085697, PMID 6668417
R01HD090138 (1)