The HEDGE Study is an international collaboration led by The Ehlers-Danlos Society. Below is a full list of the teams, contributors, and governance structures involved in the study.
Enrollment Team
These healthcare professionals and medical providers assisted with the review, screening, and enrollment of HEDGE participants:
- Woodrow Gandy, MD
- Helen Cohen, EdD, OTR, FAOTA
- Qasim Aziz, MBBS, FRCP, PhD
- Lies Rombaut, PhD
- Fransiska Malfait, MD, PhD
- Alan Hakim, MA, FRCP
- Jane Schubart, MBA, MS, PhD
- Clair Francomano, MD
- Jonathan Treadwell, MA
- Erin Fox, RN
- Anthony Vandersteen, MD, PhD, BM FRCP
- Heidi Collins, MD
- Brad Tinkle, MD, PhD
- Howard Levy, MD, PhD
- Tim Tramontana, MD
- Erin Conboy, MD
- Rubina Aktar, PhD
- Hanna Kaz Kaz, BA, MSc, MB
- Inge De Wandele, PT, MT, PhD
- Alissa Zingman, MD, MPH
- Alan Pocinki, MD, FACP
- Irman Forghani, MD, FACMG
- Amy Kontorovich, MD, PhD
- Karrelle Benistan, MD
- Laura Gandy
- Maggie Buckley
Contributing Previously Sequenced Data
- Christina Laukaitis, MD, PhD, FACP, FACMG
- Marina Colombi, PhD
Society Staff and Consultants Involved with the Study
Current Staff:
- Lara Bloom
- Oumaima Nehaili
Former Employees:
- Lakshmi Sravya Konakanchi
- Rebecca Gluck
- Scott Stoll
- Izabelle Manning
- Marisa Bergfield
- Angela Ballard
- Brian Johnson
- Carol Everson
Analysis Leads
- Joel Hirschhorn, MD, PhD
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- Board-certified in Medical Genetics, Endocrinology, and Pediatrics
- Concordia Professor of Pediatrics and Professor of Genetics at Boston Children’s Hospital and Harvard Medical School
- Christina Laukaitis, MD, PhD, FACP, FACMG
- Board-certified in Internal Medicine and Medical Genetics
- Associate Professor at the University of Illinois and the Carle Illinois College of Medicine
Governance Committee
Responsible for overseeing the HEDGE study, ensuring protocols and fund allocations are in place:
- Clair Francomano, MD
- Woodrow Gandy, MD
- Melanie Macleod, MD
- Lara Bloom
- Raymond Dalgleish, PhD
- Joel Hirschhorn, MD, PhD
- Christina Laukaitis, MD, PhD, FACP, FACMG
Publications Committee
Responsible for the peer review and publication process of all HEDGE-related research:
- Clair Francomano, MD
- Joel Hirschhorn, MD, PhD
- Christina Laukaitis, MD, PhD, FACP, FACMG
- Fransiska Malfait, MD, PhD
HEDGE Biobank
- Genetic Alliance Precision for Medicine Biobank and Reprocell USA – Store blood samples collected for the HEDGE study and Biobank.
Blood Processing Provider
- Reprocell (USA) – Isolates DNA, serum, and plasma from blood samples and sends the processed samples to the HEDGE Biobank.
Virtual Screening & Blood Test Providers
- ExamOne (U.S.) – Certified phlebotomists collect blood samples at participants’ homes or local labs.
- MedScreen Medical (non-U.S.) – Certified phlebotomists collect blood samples from international participants.
Acknowledgment
The Ehlers-Danlos Society wishes to thank all individuals and institutions involved in making the HEDGE study possible, along with the more than 1,000 participants whose contributions are shaping the future of hEDS research.
