Universal Rare Gene Study: A Registry and Natural History Study of Retinal Dystrophies Associated With Rare Disease-Causing Genetic Variants

IsraelRecruiting

Conditions

Inherited Retinal Degeneration · Retinitis Pigmentosa

Simple summaryAI-assisted

This summary is produced by a language model and is experimental. It may be incomplete or inaccurate and is not a substitute for professional medical advice.

Locations

University of Arkansas, Jones Eye Institute, Little Rock, Arkansas, United States
Contact: Study coordinator (Sami Uwaydat, MD) · schauhan@uams.edu · 501-296-1156
USC Roski Eye Institute, Los Angeles, California, United States
Contact: Study coordinator (Hossein Ameri, MD, PhD) · mariana.edwards@med.usc.edu · 323-442-6490
University of California San Francisco, San Francisco, California, United States
Contact: Study coordinator (Jacque Duncan, MD) · ErikaMae.Reyes@ucsf.edu · (415)502-5161
University of Florida Health Jacksonville, Jacksonville, Florida, United States
Contact: Study coordinator (Sandeep Grover, MD) · Ghulam.hamdani@jax.ufl.edu
University of Miami, Bascom Palmer Eye Institute, Miami, Florida, United States
Contact: Study coordinator (Byron Lam, MD) · srt150@med.miami.edu · (305) 243-0314
Study coordinator · (786) 218-8363
Emory University, Emory Eye Center, Atlanta, Georgia, United States
Contact: Study coordinator (Nieraj Jain, MD) · olga.ostretsova@emory.edu · 404-778-4725
Johns Hopkins University, Wilmer Eye Institute, Baltimore, Maryland, United States
Contact: Study coordinator (Mandeep S. Singh, MD, PhD) · Mfrey3@jhmi.edu · 443-287-7912
Study coordinator · sthom142@jhmi.edu · 410-502-1231
Harvard Univ., Massachusetts Eye and Ear Infirmary, Boston, Massachusetts, United States
Contact: Study coordinator (Rachel Huckfeldt, MD, PhD) · fperez7@meei.harvard.edu · 617-573-4401
University of Michigan, Kellogg Eye Center, Ann Arbor, Michigan, United States
Contact: Study coordinator (Abigail Fahim, MD, PhD) · callieg@med.umich.edu · 734-615-8560
Mayo Clinic, Rochester, Minnesota, United States
Contact: Study coordinator (Brittni Scruggs, MD, PhD) · Wernimont.Suzanne@mayo.edu · 507-538-8119
Duke University, Duke Eye Center, Durham, North Carolina, United States
Contact: Study coordinator (Ramiro Maldonado, MD) · natalia.cook@duke.edu · 1-919-668-8333
Oregon Health & Science Univ., Casey Eye Institute, Portland, Oregon, United States
Contact: Study coordinator (Lesley Everett, MD, PhD) · faleolse@ohsu.edu · (503) 494-3370
University of Pennsylvania, Scheie Eye Institute, Philadelphia, Pennsylvania, United States
Contact: Study coordinator (Tomas Aleman, MD) · Mariejel.weber@pennmedicine.upenn.edu · 215-662-6396
UPMC Eye Center, Pittsburgh, Pennsylvania, United States
Contact: Study coordinator (Boris Rosin, MD, PhD) · alabekm@upmc.edu · 412-642-1940
Retina Foundation of the Southwest, Dallas, Texas, United States
Contact: Study coordinator (Mark Pennesi, PhD) · kwebb@retinafoundation.org · 214-363-3911
Contact: Study coordinator (Kaylie Jones)
Baylor College of Medicine, Alkek Eye Center, Houston, Texas, United States
Contact: Study coordinator (John T. Stout, MD, PhD) · Isabella.Valli@bcm.edu · 713-798-2759
University of Utah, John Moran Eye Center, Salt Lake City, Utah, United States
Contact: Study coordinator (Paul Bernstein, MD, PhD) · u0740625@utah.edu · 801-213-2034
University of Wisconsin Madison, Madison, Wisconsin, United States
Contact: Study coordinator (Kimberly Stepien, MD) · nstangel@wisc.edu · 608-263-8783
Medical College of Wisconsin Eye Institute, Milwaukee, Wisconsin, United States
Contact: Study coordinator (Thomas Connor, MD) · psummer@mcw.edu · 414-955-2001
Centre for Eye Research Australia, East Melbourne, Victoria, Australia
Contact: Study coordinator (Lauren Ayton, MD, PhD) · IRD@groups.unimelb.edu.au · 61 3 8344 3441
Ghent University, Ghent, Belgium
Contact: Study coordinator (Bart Leroy, MD, PhD)
INRET Clínica e Centro de Pesquisa, Belo Horizonte, Minas Gerais, Brazil
Contact: Study coordinator (Fernanda Belga Ottoni Porto, MD, PhD) · fernandabop@gmail.com · 55 31 32264882
Instituto de Genética Ocular, São Paulo, São Paulo Province, Brazil
Contact: Study coordinator (Juliana Sallum, MD, PhD) · pesquisa@institutodegeneticaocular.com.br · 55 11 98346
University of Alberta and Alberta Health Services, Edmonton, Alberta, Canada
Contact: Study coordinator (Ian MacDonald, MSc, MD CM) · ovstrial@ualberta.ca · 780 492 8869
University of Toronto, Hospital for Sick Children, Toronto, Ontario, Canada
Contact: Study coordinator (Elise Heon, MD) · sabahat.javaid@sickkids.ca · 416.813.7654
Contact: Study coordinator (Sabahat Javaid)
University Health Network, Toronto, Canada
Contact: Study coordinator (Brian Ballios, MD, PhD) · Zahra.Baghestani@uhn.ca · 416-603-5800
Helsinki University Hospital, Helsinki, Finland
Contact: Study coordinator (Eeva-Marja Sankila, MD) · eeva-marja.sankila@hus.fi · +358 9 4711
CHNO des Quinze-Vingts, Paris, France
Contact: Study coordinator (Isabelle Audo, MD) · tdib@15-20.fr · +33(0) 1 40 02 14 55
Hadassah-Hebrew University Medical Center, Jerusalem, Israel
Contact: Study coordinator (Eyal Banin, MD) · devoramarks@gmail.com · 972-54-4969153
Vista Vision Eye Clinic, Brescia, Italy
Contact: Study coordinator (Giacomo Calzetti, MD) · giacomocalzetti@gmail.com · 39 333 932 9837
Retina and Genomics Institute, Yucatán, Merida, Mexico
Contact: Study coordinator (Adda Villanueva, MD) · info@mejoravisionmd.com · 52 999 22 33 623
Study coordinator · 52 999 406 0586
Radboud University Medical Center, Nijmegen, Netherlands
Contact: Study coordinator (Suzanna Yzer, MD) · jack.weeda@radboudumc.nl · +31 24 3613212
Oslo University Hospital, Oslo, Norway
Contact: Study coordinator (Josephine P Holtan, MD, PhD) · thatre@ous-hf.no
University Hospital Basel, Basel, Canton of Basel-City, Switzerland
Contact: Study coordinator (Nicolas Feltgen, MD) · ursula.hall@usb.ch · 41 79 172 92 48
University Hospital Jules-Gonin, Lausanne, Switzerland
Contact: Study coordinator (Hoai V. Tran, MD) · aurelia.gryczka@fa2.ch · +41 (0)21 626 8154
Moorfields Eye Hospital, London, United Kingdom
Contact: Study coordinator (Michel Michaelides, MD) · shummi.begum@nhs.net · 02075662108

Study leads

José-Alain Sahel, MD
Study Chair
Director, UPMC Eye Center University of Pittsburgh School of Medicine

View source on ClinicalTrials.gov Contact study team (email)