ProgSTAR, a Global Natural History Study for Stargardt Disease, Featured at ARVO

Sponsored by the Foundation Fighting Blindness Clinical Research Institute, ProgSTAR is boosting knowledge and therapy development for leading cause of inherited macular degeneration

(Seattle, WA) — Clinical researchers participating in ProgSTAR, the largest natural history study ever launched for Stargardt disease, will deliver five poster and four paper presentations on their interim findings at the 2016 annual meeting of the Association for Research in Vision and Ophthalmology (ARVO).

The $6 million study has enrolled more than 365 unique participants at12 sites around the world. ProgSTAR was launched by the Foundation Fighting Blindness Clinical Research Institute (FFB-CRI) to gain a better understanding of the progression of vision loss and retinal degeneration for people with Stargardt disease, which affects more than 500,000 people worldwide. A major goal of the prospective and retrospective study is to identify a reliable and expedient outcome measure that can be used in clinical trials for emerging therapies. ProgSTAR results and data are being published and openly shared with the research community. Investigators plan to complete the study in 2017.

“We have a great need for a clinical-trial endpoint that researchers and companies can use in development of vision-saving therapies for Stargardt disease,” says Janet Cheetham, Pharm.D., ProgSTAR liaison at FFB-CRI. “With many promising therapies moving into the pipeline, the timing for such an outcome measure is right. It will give biotechs and pharma the knowledge they need to launch cost-effective, efficient, and successful clinical trials.”

“As the world’s leading private non-profit for funding retinal disease research, we are the ideal group to be leading this study,” says Patricia Zilliox, Ph.D., chief drug development officer at FFB-CRI.  “By widely disseminating knowledge gleaned from ProgSTAR, we have the opportunity to move the whole industry forward and accelerate the advancement and delivery of therapies to the people who desperately need them.”

Hendrik Scholl, M.D., is ProgSTAR’s protocol principal investigator and study director at the Wilmer Eye Institute, Johns Hopkins University School of Medicine. “We are very excited to share our interim findings with the international research community,” he says. “The knowledge we disseminate at ARVO will no doubt have a significant impact on the overall understanding of the disease and treatment development.”

ProgSTAR papers at ARVO (all morning of May 4):

Associations between fundus autofluorescence and spectral-domain optical coherence tomography in Stargardt disease at baseline of the prospective ProgSTAR study.
Presenter: Yulia Wolfson, Wilmer Eye Institute, Johns Hopkins Hospital
Abstract # 4285
Wed., May 4, 8:30-8:45 a.m., Room 6B

Six-month-change in microperimetric mean sensitivity, fixation location and fixation stability in Stargardt disease: The prospective ProgSTAR study.
Presenter: Shazia Khan, Johns Hopkins University School of Medicine
Abstract #4286
Wed., May 4, 8:45-9:00 a.m., Room 6B

Progression of atrophic lesions prospectively determined by fundus autofluorescence: the natural history of the progression of atrophy secondary to Stargardt disease (ProgSTAR) study.
Presenter: Rupert Strauss, Johns Hopkins University
Abstract #4287
Wed., May 4, 9:00-9:15 a.m., Room 6B

Visual acuity loss during one year in Stargardt Disease: ProgSTAR Prospective Study.
Presenter: Xiangrong Kong, Johns Hopkins University School of Medicine
Abstract #4288
Wed., May 4, 9:15 - 9:30 a.m., Room 6B

ProgSTAR posters at ARVO (all afternoon of May 2):

Progression of visual acuity and fundus autofluorescence in recent onset Stargardt disease: ProgSTAR study.
Presenter: Sheila West, Johns Hopkins Medicine
Poster #C0138
Mon., May 2, 3:45-5:30 p.m., Exhibit/Poster Hall

Cross-sectional evaluation of microperimetric fixation location and stability in Stargardt disease in the ProgSTAR study.
Presenter: Etienne Schonbach, Johns Hopkins University School of Medicine
Poster #C0145
Mon., May 2, 3:45-5:30 p.m., Exhibit/Poster Hall

The natural history of the progression of atrophy secondary to Stargardt disease type 4 (Progstar-4 Study): Baseline demographics and ocular characteristics of patients with PROM-1 related retinal dystrophy.
Presenter:  Syed Mahmood Shah, Wilmer Eye Institute, Johns Hopkins Hospital
Poster #C0146
Mon., May 2, 3:45-5:30 p.m., Exhibit/Poster Hall

Scotopic and photopic macular functions as assessed with microperimetry (MP1) in patients with Stargardt disease type 1 – The SMART Study.
Presenter:  Mohamed Ibrahim, Wilmer Eye Institute, Johns Hopkins Hospital
Poster #C0147
Mon., May 2, 3:45-5:30 p.m., Exhibit/Poster Hall

Results from spectral-domain optical coherence tomography (SD-OCT) at baseline compared with normative data: The Natural History of the Progression of Atrophy Secondary to Stargardt Disease (ProgSTAR) Study.
Presenter: Alexander Ho, Doheny Eye Institute
Poster #C0148
Mon., May 2, 3:45-5:30 p.m., Exhibit/Poster Hall

FOR RELEASE: April 26, 2016
Contact: Ben Shaberman
410 499-9158/BShaberman@FightBlindness.org

Original Date: 
Tuesday, April 26, 2016