How to Participate

MacTel Project Registry

Individuals who have been diagnosed with macular telangiectasia type 2 and their family members can participate in clinical research through the Lowy Medical Research Institute. Clinical research includes the Registry, its associated genetics study, and clinical trials.  If you would like to participate in clinical research, the first step is to enroll in the MacTel Project Registry.

To enroll in the Registry, please refer to the list of registry sites.  Contact the site most accessible to you, or contact us for assistance. The study coordinator at the site will assist you with scheduling an appointment.

If you have family members who also have MacTel, who may develop MacTel with age, or who have vision problems similar to MacTel, your immediate family can participate in the registry. Families are an important aspect of LMRI’s genetics and laboratory research programs, and we invite both affected and unaffected family members to participate.

By enrolling in the Registry, you may have the opportunity to participate in clinical trials.  You will also be contributing to medical knowledge about macular telangiectasia type 2.

If you have questions about the Registry or ongoing clinical trials, please contact LMRI.

We encourage you to learn about clinical trials that are currently open for enrollment.

Register in the Contact Database

Please consider registering in the LMRI contact database.  By registering, you can stay up to date on clinical research at LMRI and new opportunities to participate in MacTel research.


Choose a country or region:

United States


California

Hamilton Glaucoma Center, UCSD

La Jolla, CA USA
Christopher Toomey, MD, PhD

Veronica Rubio
Tel: 858-822-4669
Email: shileyhgcresearch@health.ucsd.edu

Scripps Health:  NOT ENROLLING AT THIS TIME

La Jolla, CA USA
Martin Friedlander, MD, PhD

Daphne Breshears
Tel: 858-554-9611
Email: Breshears.Daphne@scrippshealth.org

Jules Stein Eye Institute, UCLA:  NOT ENROLLING AT THIS TIME

Los Angeles, CA USA
Kirk Hou, MD

Rosaleen Ostrick
Tel: 310-794-5595
Email: ostrick@jsei.ucla.edu

Stephanie Andrade
Tel: 310-267-5278
Email: SDAndrade@mednet.ucla.edu

Frank Chaves
Tel: 310-794-5596
Email: FrankChavez@mednet.ucla.edu

Bay Area Retina Associates

Walnut Creek, CA USA
Roger Goldberg, MD

Ana Magsayo
Tel: 925-265-4146
Email: amagsayo@bayarearetina.com


Florida

Bascom Palmer Eye Institute, University of Miami

Miami, FL USA
Philip Rosenfeld, MD, PhD

Asha Dorsey, MPH, CCRP
Email: axd1181@med.miami.edu

Maria Y. Esquiabro, CCRC, CCRA
Tel: 305-326-6508
Email: mesquiabro@med.miami.edu


Georgia

Emory University

Atlanta, GA
Jiong Yan, MD

Donna Leef
Tel: 404-778-4134
Email: dleef@emory.edu


Massachusetts

Massachusetts Eye and Ear Infirmary

Boston, MA USA
Joan Miller, MD

Michael Cheung
Tel: 617-573-6981
Email:  Mcheung0@meei.harvard.edu


Michigan

University of Michigan, Kellogg Eye Center

Ann Arbor, MI USA
Grant Comer, MD

Courtney Snyder
Tel: 734-936-9798
Email: Cosoto@med.umich.edu

Jessica Cassedy
Tel: 734-936-0138
Email: Jessboes@med.umich.edu

Associated Retinal Consultants – Royal Oak

Royal Oak, MI USA
Sandeep Randhawa, MD

Kendra Mellert
Tel: 248-288-9132 ext. 1313
E-mail: kmellert@arcpc.net


Minnesota

Mayo Clinic

Rochester, MN USA
Sophie Bakri, MD

Tessa Holtegaard
Email: Holtegaard.tessa@mayo.edu


Ohio

Retina Associates of Cleveland, Inc.

Cleveland, OH USA
Lawrence Singerman, MD

Diane Weiss
Tel: 216-831-5704 Ext. 244
Email: dew@retina-assoc.com


Oregon

Retina Northwest

Portland, OR USA
Michael Lee, MD

Cynthia Larsen

Tel: 971-865-2782
Email: clarsen@retinanorthwest.com


Pennsylvania

Scheie Eye Institute

Philadelphia, PA USA
Alexander Brucker, MD

Devica Bhutani
Tel: 215-662-8691
Email: devica.bhutani@pennmedicine.upenn.edu

Lansing Zhang
Tel: 215-662-8696
Email: lansing.zhang@pennmedicine.upenn.edu


Tennessee

Southeastern Retina Associates, P.C.

Knoxville, TN USA
Scott M. Barb, MD

Kristina Oliver
Tel: 865-588-0811
Email: koliver@seretina.com

Jeff Wheeler
Tel: 865-588-0811
Email: jwheeler@serretina.com


Texas

Retinal Consultants of Texas

Houston, TX USA
Charles Wykoff, MD, PhD.

Sarah Weidlein
Tel: 832-200-3905
Email: sarah.weidlein@retinaconsultantstexas.com

Rebecca Taing
Email: Rebecca.Taing@retinaconsultantstexas.com


Utah

University of Utah Medical Center

Salt Lake City, UT USA
Paul Bernstein, MD, PhD.

Barbara Hart
Tel: 801-581-6459
Email: barbara.hart@hsc.utah.edu


Washington

University of Washington Eye Institute

Seattle, WA USA
Cecilia Lee, MD

Simona Vuletic
Email: simona@uw.edu 

United Kingdom


Moorfields Eye Hospital

London, United Kingdom
Cathy Egan, MD

Rabiah Abbas Saud
Tel: 020 7566 2285
Email:  Rabiah.AbbasSaud@nhs.net


Oxford Eye Hospital

Headington, Oxford
Dr. Samantha DeSilva

Alexina Fantato
Tel:  01865 231053Email: alexina.fantato@ouh.nhs.uk

Europe


France

Hopital Lariboisiere

Paris, France
Valerie Krivosic, MD

Abir Zureik
Tel: 33 1 49 95 64 86
Email: abir.zureik@aphp.fr


Germany

Universitats-Augenklinik Bonn

Bonn, Germany
Frank Holz, MD

Anja Deutsch
Email: anja.deutsch@ukbonn.de

St. Franziskus Hospital

Muenster, Germany
Prof. Dr. Dr. Clemens Lange

Elke Attenberger
Tel: 0251-9352758
Email: elke.attenberger@uveitis-zentrum.de

Eye Center, Medical Center

Freiburg
Felicitas Bucher, MD

Dagmar Rommel
Tel: 0761 270-40231
Email: dagmar.rommel@uniklinik-freiburg.de


Netherlands

Radboud University Medical Center

Nijmegen, Netherlands

CB Hoyng, MD
Tel: +31 (0)24 36 15255
Email: trialcentrum.ohk@radboudumc.nl

Asha Kalisingh
Tel: + 0243613212
Email: asha.kalisingh@radboudumc.nl


Switzerland

Hopital Ophtalmique Jules-Gonin

Lausanne, Switzerland
Ferenc Sallo, MD

Aurelia Gryczka
Tel: +41 21 626 80 56
Email: aurelia.gryczka@fa2.ch

Australia


Center for Eye Research Australia – Cerulea Clinical Trials

Melbourne, Australia
Robyn Guymer, MD

Reception
Tel: 61 3 9959 0057
Email: info@ceruleaclinicaltrials.org.au


Lions Eye Institute

Nedlands, Australia
Ian Constable, MD

Natalie Duncalf
Tel: +618 9381 0753
Email: natalieduncalf@lei.org.au

Rachel McGee
Tel: +618 9381 0755
Email: rachelmcgee@lei.org.au


Save Sight Institute

Sydney NSW Australia
Elisa Cornish, MD

Emily Luu 
Tel +61 2 9382 7309
Email: emily.luu@sydney.edu.au

Sharon McKenzie
Tel +61 2 9382 7309
Email: sharon.mckenzie@sydney.edu.au