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In Focus is published by:
Foundation Fighting Blindness, Inc.
7168 Columbia Gateway Drive
Suite 100
Columbia, MD 21046
Foundation Board of Directors-Officers
David Brint, Chairman
Gordon Gund, Chairman Emeritus
Joel Davis, Vice Chairman, Major Gifts
Eddie Russnow, Vice Chairman, Development
Jonathan Steinberg, M.D., Vice Chairman,
Research
Warren Thaler, Vice Chairman, Board
Development & Communications
Haynes Lea, Treasurer
Yvonne Chester, Secretary
Foundation National Management Staff
William T. Schmidt, Chief Executive Officer
Stephen Rose, Ph.D., Chief Research Officer
Valerie Navy-Daniels, Chief Development Officer
Lorraine Hirsch, CPA, Chief Financial Officer
Patricia Dudley, Chief Human Resources Officer
Patricia Zilliox, Ph.D., Chief Drug Development
Officer
Annette Hinkle, CPA, Chief Strategy Officer
Foundation In Focus Newsletter Staff
Rhea K. Farberman, Senior Director,
Communications and Marketing
Ben A. Shaberman, Director,
Science Communications
Kim Bower, Brand Manager/Graphic Designer
Any products and/or services mentioned within
In Focus are presented as a source of
information and should not be misinterpreted
as a recommendation of the Foundation.
The Foundation has not tested or evaluated
the products reported upon to determine their
safety or effectiveness.
For a copy of this publication, write to
In Focus at the above address, or call
800-683-5555 (TOLL FREE); 800-863-5551
(FOR DEAF). Or visit us on the Internet at
www.fightblindness.org.
Physicians differ in their approach to incorporating
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You should always consult with and be guided
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©Foundation Fighting Blindness 2016
TYPE 2A STUDY, continued from page 1
strategic development and study
implementations. “The network will
enable us to collect standardized
natural history data that we’ll make
available to treatment developers
so they can launch well-designed
human studies. Hopefully, making
this patient information available
will drive more companies and
researchers to develop therapies for
rare retinal diseases. We will also
have the capacity to run all phases of
clinical trials for potential therapies
to assist companies and institutions
in obtaining regulatory approval.”
The first patients to be studied
by the Clinical Consortium will be
those with RP and Usher syndrome
(combined vision and hearing loss)
caused by mutations in USH2A. De-
fects in the gene are a leading cause
of inherited retinal disease; research-
ers estimate that USH2A mutations
account for 30 to 40 percent of all
Usher syndrome cases and 10 to 15
percent of all autosomal recessive
RP. The USH2A natural history
study will take place at approximate-
ly 20 clinical sites and follow more
than 100 patients for four years.
“Our Clinical Consortium will
play a uniquely valuable role in
increasing the knowledge of retinal
diseases in humans, and providing
that information to industry to
boost therapy development,” says
Patricia Zilliox, Ph.D., Chief Drug
Development Officer, CRI. “As a
leading research-savvy nonprofit,
we are strategically positioned to co-
ordinate and invest in these critical
natural history studies.”
ProgSTAR, FFB-CRI’s natural
history study for people with Star-
gardt disease, was conceived well
before the Clinical Consortium was
organized, but has served as a de fac-
to pilot for it. Launched in 2013, the
$4.8 million, 250-patient ProgSTAR
study will be completed in 2017.
“While we still have a lot of work
to do in analyzing the data collected,
we are very pleased with how well
ProgSTAR has progressed thus far,”
says Dr. Zilliox. “Our investigators
were able to set up effective clinical
centers, identify a large cohort of
patients, and collect valuable imaging and functional data. ProgSTAR
shows that our consortium concept
can work well.”
Discounted Rides and Support for FFB!
