TSC Alliance Clinical Research Network

In 2025, the TSC Alliance launched the TSC Clinical Research Network (CRN) with the TSC Alliance serving as a central hub for patient-focused clinical research, with collaborations amongst clinical researchers, industry partners, and the TSC community.

The mission of the CRN is to lead and facilitate the development of new diagnostics, therapies, interventions, processes, and other research advances, to improve the quality of life of individuals with TSC.

The CRN:

  • Facilitates the cultivation of clinical research opportunities from industry and academic partners
  • Expands clinical research studies to include various organ systems affecting individuals with TSC throughout their lifespan
  • Assists the TSC Alliance in prioritizing areas of research focus
  • Ensures the larger network of TSC clinics have the opportunity to participate in clinical research
  • Coordinates protocol development and review, ensuring patient voice is included
  • Streamlines site selections and patient recruitment
  • Promotes patient awareness and recruitment efforts by establishing a contact registry

The CRN Steering Committee, co-chaired by Drs. Elizabeth Thiele and Martina Bebin, reflects diverse clinical expertise, research experience, and community perspectives for insight into patient-centered clinical research development.

Current CRN Steering Committee Members

Martina Bebin, MD, MPA, University of Alabama at Birmingham, CRN Co-Chair

Elizabeth Thiele, MD, PhD, Massachusetts General Hospital, CRN Co-Chair

Dean Aguiar, PhD, TSC Alliance CRN Co-Leader

Heather Radtke, MS, CGC, TSC Alliance CRN Co-Leader

Jamie Capal, MD, Cincinnati Children’s Hospital Medical Center

Peter Crino, MD, PhD, University of Maryland, Baltimore

Daniel Curry, MD, Texas Children’s

Thomas Darling, MD, PhD, Dermatology

Mary Kay Koenig, MD, UTHealth Houston

Darcy Krueger, MD, PhD, Cincinnati Children’s Hospital Medical Center

Vicki Meloney, Community Representative

Joel Moss, MD, PhD, NIH

Jason Panchal, Community Representative

Elahna Paul, MD, PhD, Massachusetts General Hospital

Ilana Wiesel, Community Representative

For Clinicians and Researchers

The CRN is open only to TSC Alliance-recognized institutions. If you are a TSC clinician or researcher, and would like to participate in the CRN, please request access to the members-only site here.

For Industry Partners

Companies interested in furthering their clinical development collaboratively with the TSC Alliance CRN may join as Industry Partner Members.

For more information please contact Dean Aguiar, PhD at daguiar@tscalliance.org.