DID YOU KNOW?
ONE MEASURE OF THE SIGNIFICANT IMPACT
the Foundation Fighting Blindness is having on advancing
retinal disease science is the number and breadth of research
articles reporting on studies funded by the Foundation being
published and the variety of journals publishing the research.
In the third quarter of the Foundation’s soon-to-close
2017 fiscal year, journals, including the American Journal of
Ophthalmology, BMC Bioinformatics, Free Radical Biology
and Medicine, Human Molecular Genetics, Ophthalmology,
Pharmacological Research, and Retina, among others,
published 96 articles based on the research studies of
44 Foundation Fighting Blindness-funded awardees.
Topics ranged from gene therapy follow-up studies, to dose
and safety evaluation of medication, to clinical endpoints
studies, to updates on cell-based therapy for inherited retinal
diseases and covered retinitis pigmentosa, Stargardt disease,
age-related macular degeneration, and Usher syndrome
among other diseases.
Track Your Vision. Drive the Research.
My Retina Tracker is an international
online registry for people with
inherited retinal diseases.
• Raise awareness of your specific disease
to researchers and companies
• Share your data to support research;
your data is only shared with qualified
researchers and with your permission
• Build knowledge about rare retinal diseases
• Put yourself on the radar for clinical trials
• Join the registry
• Create a profile
• Update your profile regularly
• Add clinical data
For Support or Information
KNOWING, continued from page 3
patient, the registry coordinator, and FFB’s deputy chief
research officer, who oversees the registry. If the patient
provides permission, all other data about their disease,
gene, progression, and impact on daily living can be
made available to researchers who can demonstrate to the
Foundation they meet appropriate scientific and ethical
standards. Companies and clinicians seeking to enroll
candidates in clinical trials can contact participants through
the registry staff, following a rigorous scientific and ethical
review process of the proposed trial.
“Many of today’s emerging therapies are gene and even
mutation specific. That makes projects like FFB’s My Retina
Tracker and Spark’s ID Your IRD critically important tools
so patients (and their doctors) can better understand the
genetic basis of their inherited retinal disease and their
eligibility for particular clinical trials,” said Brian Mansfield,
FFB deputy chief research officer.
My Retina Tracker is supported by a generous grant
from the George Gund Foundation. For more information
or to join the registry, visit: www.myretinatracker.org.