How to Participate

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.


United States

California

Scripps Health

La Jolla, CA USA
Martin Friedlander, MD, PhD

Jennifer Trombley, RN
Tel: 760-666-0452
Email: Trombley.jennifer@scrippshealth.org

 

Jules Stein Eye Institute, UCLA

Los Angeles, CA USA
Jean-Pierre Hubschman, MD

Veronika Sadykov
Tel: 310-794-5596
Email: Sadykov@jsei.ucla.edu

Mary Crowley
Tel: 310-267-5278 Email:
Email: MECrowley@mednet.ucla.edu

 

University of California – San Francisco

**REGISTRY (NHOR) ONLY**

UCSF Department of Ophthalmology
San Fransciso, CA USA
Jacque Duncan, MD

Arshia Mian
Tel: 415-476-0444
Email: arshia.mian@ucsf.edu

 

Byers Eye Institute – Stanford University

Palo Alto, CA USA
Diana Do, MD

Lisa Greer
Tel: 650-725-9184
Email: lgreer7@stanford.edu

 

Bay Area Retina Associates

Walnut Creek, CA USA
Roger Goldberg, MD

Sara Malakzay
Tel: 925-943-6800
Email: smalakzay@bayarearetina.com

 

Retina-Vitreous Associates Medical Group

Beverly Hills, CA USA
David Boyer, MD

Sofia Gomez Gudiel
Tel: 310-289-2478 ext. 3
Email: SGomez@laretina.com  

Janet Kurokouchi
Tel: 310-289-2478 ext. 3
Email: JKurokouchi@laretina.com

 

Global Research Foundation

Los Angeles, CA USA
Khaled Tawansy, MD

Monica Torres
Tel: 323-257-3300 ext. 120
Email: mtorres@globalresearchgroup.net

 

 

Colorado

Retina Consultants of Southern Colorado

**REGISTRY (NHOR) ONLY**

Colorado Springs, CO
Ryan Rich, MD

Sarah Roberts
Tel: 719-473-9595 ext. 134
Email: sroberts@coloradoretina.com

Brad Lovelace
Email: bradlovelace@coloradoretina.com

 

 

Florida

Bascom Palmer Eye Institute, University of Miami

**REGISTRY (NHOR) ONLY**

Miami, FL USA
Philip Rosenfeld, MD

Cristina Lage-Rodriguez
Tel: 305-326-6117
Email: clage@med.miami.edu

 

Center for Retina and Macular Disease-Central Florida

Winter Haven, FL USA
Richard Hamilton, MD

Toni Collins
Tel: 863-297-5400 ext. 2046
Email: tocol@crmd.net

Esmeralda Medina
Email: esme@crmd.net

Lorrie Dean
Email: lode@crmd.net

 

 

Georgia

Emory University

Atlanta, GA
Jiong Yan, MD

Jayne Brown
Tel: 404-778-4430
Email: jmbrown@emory.edu

 

 

Illinois

Northwestern University

Evanston, IL
Amani Fawzi, MD

Nicole Seddon
Tel: 312.695-0252
Email: nreinhol@nm.org 

 

 

Louisiana

Retina Associates New Orleans

New Orleans, LA USA
Stanislav A. Zhuk, MD

Corey Marvel
Tel: 504-456-9061 ext 1111
Email: cmarvel@retinaassociates.org

Melinda Mitchell
Email: Melinda.mitchell@retinaassociates.org

 

 

Maryland

Cumberland Valley Retina Consultants

Hagerstown, MD 21740
David Warrow, MD

Paula Smith
Tel: 301-665-1712
Email: paulas@retinacare.net

 

Elman Retina Group, P.A.

Baltimore, MD USA
Michael J Elman, MD

JoAnn Starr
Tel: 410-686-3000
Email: Starr@elmanretina.com

 

Massachusetts

Massachusetts Eye and Ear Infirmary

Boston, MA USA
Joan Miller, MD

Patricia Houlihan
Tel: 617-573-3646
Email: patricia_houlihan@meei.harvard.edu

 

New England Retina Consultants

Springfield, MA USA
David Lally, MD

Leah Persky
Tel: 413-788-6044
Email: persky.leah@gmail.com

 

 

Michigan

University of Michigan, Kellogg Eye Center

Ann Arbor, MI USA
Grant Comer, MD

Pam Campbell
Tel: 734-936-0138
Email: pamtitus@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

 

Associated Retinal Consultants – Grand Rapids

Grand Rapids, MI USA
V. Raphaelian, M.D.

Deb Markus
Email: dmarkus@arcpc.net

 

Associated Retinal Consultants – Traverse City

Traverse City, MI USA
Scott Sneed, MD

Serena Neal
Email: sneal@arcpc.net

 

 

Minnesota

Mayo Clinic

Rochester, MN USA
Sophie Bakri, MD

Heidi Rubin
Email: Rubin.heidi@mayo.edu

 

 

Nevada

Sierra Eye Associates

Reno, NV USA
Arshad Khanani, MD

Deanna Dorman
Tel: 775-329-0286 x 141
Email:ddorman@sierraeyeassociates.com

 

 

New Jersey

Retina Center of New Jersey

**REGISTRY (NHOR) ONLY**

Bloomfield, NJ USA
Patrick Higgins, MD

Diane Deininger
Tel: 973-707-5632
Email: ddeininger@retinacenternj.com

Susan Anderson
Tel: 973-707-5632
Email: sanderson@retinacenternj.com

 

 

New York

Vitreous, Retina, Macula Consultants of New York

**REGISTRY (NHOR) ONLY**

New York, NY USA
Lawrence A. Yannuzzi, MD

Renata Salgado
Tel: 212-452-6965
Email: rsalgado@vrmny.com

 

University of Rochester

Rochester, NY USA
Mina Chung, MD

Lisa Latchney
Tel: 585-273-2742
Email: Lisa_latchney@urmc.rochester.edu

 

Ophthalmic Consultants of Long Island

Oceanside, NY USA
Glenn Stoller, MD

Isabel Lezcano
Tel: 516-593-4026
Email: ilezcano@ocli.net

Susan Jones
Email: sjones@ocli.net

Carla Del Castillo
Email: cdelcastillo@ocli.net

 

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

 

Cincinnati Eye Institute

Cincinnati, OH USA
Daniel Miller, MD

Megan Kingdon
Tel: 513-569-3669
Email: mkingdon@cincinnatieye.com

 

Oklahoma

Tulsa Retina Consultants

Tulsa, OK USA
Lars Freisberg, MD

Scott Hewitt
Tel: 918-734-6344
Email: shewitt@retinatulsa.com

Debbie Hardison
Email: dhardison@retinatulsa.com

 

Oregon

Retina Northwest

Portland, OR USA
Michael Lee, MD

Pualani Smith

Tel: 971-865-2780
Email: psmith@retinanorthwest.com

 

Pennsylvania

Scheie Eye Institute

Philadelphia, PA USA
Alexander Brucker, MD

Sheri Drossner
Tel: 215-662-8177
Email: Sheri.Grand@uphs.upenn.edu

 

South Carolina

Palmetto Retina Center

West Columbia, SC USA
John A Wells III, MD

Peggy Miller
Tel: 803-404-5038
Email: pmcdougal@palmettoretina.com

Mallie Taylor 
Email: mtaylor@palmettoretina.com

Ashley Studebaker
Email: astudebaker@palmettoretina.com

 

Tennessee

Southeastern Retina Associates, P.C.

Knoxville, TN USA
Joseph M Googe Jr, MD

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

Julie Asher
Tel: 865-588-0811
Email: jasher@serretina.com

 

Charles Retina

Germantown, TN USA
Steve Charles, MD

Melanie Woods
Tel: 901-683-0399 ext. 217
Email: mwoods@charlesretina.com

Denise Barney
Tel: 901-767-4499
Email: dbarney@charlesretina.com

 

Texas

Retina Research Center

Austin, TX USA
Chirag Jhaveri, MD

Brian Berger, MD

Ivana Gunderson
Tel: 512-279-1251
Email: igunderson@e-retina.net

 

Retinal Consultants of Houston

Houston, TX USA
Charles Wykoff, MD, PhD.

Cassie Cone
Tel: 713-524-3434 or 713-394-7537
Email: cassandra.cone@houstonretina.com

Jose Munoz
Tel: 713-394-7577
Email: jose.munoz@houstonretina.com

 

Texas Retina Associates

Dallas, TX USA
Gary Fish, MD

Karen Duignan
Tel: 214-692-6885 ext. 1
Email: kduignan@texasretina.com

Tiffanie Keaton
Email: tkeaton@texasretina.com

 

 

Utah

University of Utah Medical Center

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

Kara Halsey
Tel: 801-213-2034
Email: Kara.halsey@utah.edu

 

 

Washington

University of Washington Eye Institute

**REGISTRY (NHOR) ONLY**

Seattle, WA USA
Cecilia Lee, MD

Ian Luttrell
Email: luttri@uw.edu

Francy Moses
Email: mosesf@uw.edu

 

 

Wisconsin

Medical College of Wisconsin

**REGISTRY (NHOR) ONLY**

Milwaukee, WI USA
David Weinberg, MD

Ellie Dorsey
Tel: 414-955-7854
Email: edorsey@mcw.edu

United Kingdom

Moorfields Eye Hospital

London, United Kingdom
Cathy Egan, MD

Panayiotis Panayiotou
Tel: 020 7253 3411 ext. 4652

Email: Panayiotis.Panayiotou@moorfields.nhs.uk

 

 

Oxford Eye Hospital

Headington, Oxford
Peter Charbel Issa MD

Alexina Fantato
Tel:  01865 231053

Email: alexina.fantato@ouh.nhs.uk

Netherlands

Radboud University Medical Center

**REGISTRY (NHOR) ONLY**

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

 

 

Eramus Medical Center

**REGISTRY (NHOR) ONLY**

Rotterdam, Netherlands
J. Vingerling, MD

Annelies Hameete
Email: a.vietje-hameete@erasmusmc.nl

Germany

Universitats-Augenklinik Bonn

Bonn, Germany
Frank Holz, MD

Simone Müller
Email: Simone.Mueller@ukbonn.de

Kerstin Bartsch
Email: Kerstin.Bartsch@ukbonn.de

 

 

St. Franziskus Hospital

Muenster, Germany
Prof. Daniel Pauleikhoff

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

 

 

Eye Center, Medical Center

Freiburg
Felicitas Bucher, MD

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

France

Hopital Lariboisiere

Paris, France
Alain Gaudric, MD

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

Australia

Center for Eye Research Australia

Melbourne, Australia
Robyn Guymer, MD

Melinda Cain
Tel: 61 3 9929 8388
Email: mcain@unimelb.edu.au

Emily Caruso
Tel: 61 3 9929 8113
Email: emily.caruso@unimelb.edu.au

 

 

Lions Eye Institute

Nedlands, Australia
Ian Constable, MD

Toni Busby
Tel: +61 08 6382 0582
Email: toni.busby@lei.org.au

Diana Bowman
Tel: +61 8 9381 0777
Email: DianaBowman@lei.org.au

 

 

 

Save Sight Institute

Sydney NSW Australia
Mark Gillies, MD, PhD

Antoinette Dezoysa
Tel +61 2 9382 7309
Email: Antoinette.dezoysa@sydney.edu.au

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