| 1 |
Updated International Tuberous Sclerosis Complex Diagnostic Criteria and Surveillance and Management Recommendations
Hope Northrup et al. · Pediatric Neurology
Open access107 authors |
24 Jul 2021 |
750 |
| 2 |
International consensus recommendations for the identification and treatment of tuberous sclerosis complex-associated neuropsychiatric disorders (TAND)
Petrus J. de Vries et al. · Journal of Neurodevelopmental Disorders
Open access |
14 Sep 2023 |
61 |
| 3 |
The research landscape of tuberous sclerosis complex–associated neuropsychiatric disorders (TAND)—a comprehensive scoping review
Stephanie Vanclooster et al. · Journal of Neurodevelopmental Disorders
Open access |
12 Feb 2022 |
45 |
| 4 |
Beyond the Guidelines: How We Can Improve Healthcare for People With Tuberous Sclerosis Complex Around the World
Clare Stuart, Carla Fladrowski, Jennifer Flinn et al. · Pediatric Neurology
Open access |
26 Jul 2021 |
32 |
| 5 |
Empowering Families Through Technology: A Mobile-Health Project to Reduce the TAND Identification and Treatment Gap (TANDem)
Tosca-Marie Heunis et al. · Frontiers in Psychiatry
Open access |
28 Feb 2022 |
24 |
| 6 |
Development and Feasibility of the Self-Report Quantified Tuberous Sclerosis Complex-Associated Neuropsychiatric Disorders Checklist (TAND-SQ)
Tosca-Marie Heunis et al. · Pediatric Neurology
Open access |
7 Jul 2023 |
21 |
| 7 |
Characterization and management of facial angiofibroma related to tuberous sclerosis complex in the United States: retrospective analysis of the natural history database
Sreedevi Boggarapu, Steven L. Roberds, JoAnne Nakagawa et al. · Orphanet Journal of Rare Diseases
Open access |
14 Sep 2022 |
16 |
| 8 |
Strategies for inclusive grantmaking
Maryrose Franko, Sindy Escobar-Alvarez, Zoë Fuchs et al. · Nature Medicine
|
Apr 2022 |
8 |
| 9 |
A Patient Perspective on Seizure Detection and Forecasting
Aria Moss, Evan Moss, ROBERT E. MOSS et al. · Frontiers in Neurology
Open access |
11 Feb 2022 |
7 |
| 10 |
Epilepsy Community at an Inflection Point: Translating Research Toward Curing the Epilepsies and Improving Patient Outcomes
Ilene Penn Miller, JayEtta Hecker, Brandy E. Fureman et al. · Epiliepsy currents/Epilepsy currents
Open access |
30 Jun 2021 |
7 |
| 11 |
Validation of the self-report quantified Tuberous Sclerosis Complex-Associated Neuropsychiatric Disorders Checklist (TAND-SQ)
Nola J. Chambers et al. · Orphanet Journal of Rare Diseases
Open access |
13 Jun 2025 |
5 |
| 12 |
Angiotensin II receptor type 1 blockade regulates Klotho expression to induce TSC2-deficient cell death
Shikshya Shrestha, Elio Adib, Jewel Imani et al. · Journal of Biological Chemistry
Open access |
8 Oct 2022 |
4 |
| 13 |
The role of the TSC Alliance in advancing therapy development: a patient organization perspective
Steven L. Roberds, Zoë Fuchs, Elizabeth M. Cassidy et al. · Therapeutic Advances in Rare Disease
Open access |
2024 |
3 |
| 14 |
Racial differences in the dermatological manifestations of tuberous sclerosis complex and the potential effects on diagnosis and care
Ashley J. Pounders, Gabrielle V. Rushing, Sonal Mahida et al. · Therapeutic Advances in Rare Disease
Open access |
2022 |
3 |
| 15 |
Chemical Biology Screening Identifies a Vulnerability to Checkpoint Kinase Inhibitors in TSC2-Deficient Renal Angiomyolipomas
Robert M. Vaughan, Jennifer J. Kordich, Chun-Yuan Chan et al. · Frontiers in Oncology
Open access |
10 Mar 2022 |
2 |
| 16 |
The small molecule simufilam dose‐dependently attenuates the worsening of seizures in a mouse model of tuberous sclerosis complex
Branden J. Stansley, Md. Monirul Islam, Dean J. Aguiar et al. · Epilepsia
Open access |
14 Apr 2026 |
1 |
| 17 |
Closing the Gap to Interventions for Tuberous Sclerosis Complex–Associated Neuropsychiatric Disorders (TAND): Protocol for a Longitudinal Study of TAND Severity, Predictors, and Caregiver Well-Being (TANDem-2)
Petrus J. de Vries et al. · JMIR Research Protocols
Open access |
17 Mar 2026 |
1 |
| 18 |
Clinical Center for Adults With Neurodevelopmental Disorders
S.W. Cole, Kari Luther Rosbeck, Steven L. Roberds et al. · Neurology
|
30 Sep 2025 |
1 |
| 19 |
Cutaneous manifestations-associated with tuberous sclerosis complex and the use of topical rapamycin in the United States: a sub-analysis of an international survey of caregivers and patients
Sreedevi Boggarapu, Gabrielle V. Rushing, Ashley J. Pounders et al. · Orphanet Journal of Rare Diseases
Open access |
25 Aug 2025 |
1 |
| 20 |
Impact of Prolonged Seizures on Patients’ and Caregivers’ Quality of Life (P1-9.014)
Danya Kaye, Michelle Manzo, Andrea L. Wilkinson et al. · Neurology
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7 Apr 2025 |
1 |
| 21 |
Circulating biomarkers of kidney angiomyolipoma and cysts in tuberous sclerosis complex patients
Varvara I. Rubtsova, Yujin Chun, Joo‐Hwan Kim et al. · iScience
Open access |
13 Jun 2024 |
1 |
| 22 |
Co-Creation of the EpiCom Clinical Trial: Bringing the Tuberous Sclerosis Complex Patient Community, Healthcare Professionals, and the Pharmaceutical Industry Together
Lisa Moore-Ramdin, Agnies M. van Eeghen, Joanne Stevens et al. · Patient
Open access |
11 Jul 2026 |
0 |
| 23 |
Does seizure duration matter? A quantitative and qualitative study on the burden and unmet needs of prolonged seizures in people living with epilepsy and their caregivers
Danya Kaye, Rebecca H. Burns, Cédric Laloyaux et al. · Epilepsy & Behavior
Open access |
27 Jan 2026 |
0 |
| 24 |
Disease Burden and Associated Factors in Chinese Patients with Tuberous Sclerosis Complex: Results of a Patient and Caregiver Survey
Fangping Wang, Luyang Zhang, Jianxiang Liao et al. · International Journal of General Medicine
Open access |
Mar 2025 |
0 |
| 25 |
Caregiver-reported Nonseizure Outcomes with Real-world Use of Cannabidiol (CBD) in Tuberous Sclerosis Complex (TSC): Interim Results from the BECOME-TSC Survey (P8-1.010)
Sarah Wilson, Mary Kay Koenig, Debopam Samanta et al. · Neurology
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9 Apr 2024 |
0 |
| 26 |
Caregiver-reported Seizure Outcomes with Real-world Use of Cannabidiol (CBD) in Tuberous Sclerosis Complex (TSC): Interim Results From the BECOME-TSC Survey (P8-1.005)
Mary Kay Koenig, Sarah J. Wilson, Debopam Samanta et al. · Neurology
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9 Apr 2024 |
0 |
| 27 |
Circulating biomarkers of kidney tumors in TSC (tuberous sclerosis complex) patients
Varvara I. Rubtsova, Yujin Chun, Joo‐Hwan Kim et al. · medRxiv
PreprintOpen access |
Apr 2024 |
0 |
| 28 |
Family reflections: tuberous sclerosis complex (TSC)
Shelly Meitzler · Pediatric Research
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11 Sep 2020 |
0 |