On World Retina Day 2015 Retina International Calls on
Members to Pledge Support for the Development of Patient
Reported Outcomes.
Millions of adults and children across all continents will mark World Retina on
Saturday September 19, 2015 by pledging to support Retina International in the
formulation of agreed patient reported outcomes to aid the development of
clinical trials in Retinal Diseases.
Advances in the understanding and treatment of retinal degenerative diseases, both
rare and inherited and age related, will significantly reduce the emotional, social and
economic burden of sight loss. Patients now have the opportunity to participate in a
meaningful way in the development of life changing therapies that will benefit them
and future generations of their families.
Before a therapeutic intervention in any disease can be approved for use, it must
undergo extensive testing in large, multi-centre clinical trials to demonstrate efficacy.
Approval is contingent on the successful achievement of endpoints in clinical trials
and the selection of these is critical to the development of new therapeutic agents.
An endpoint is a measurement by which a trial is deemed as success or a
failure.
Although developing standards for clinical trials in ophthalmology sets a basis for
meeting adequate safety and efficacy outcomes, the evolution of medicine requires
that these standards be continually reviewed and updated. The involvement of
patients affected by retinal disorders in the development of agreed endpoints is well
supported by researchers, clinicians and regulators. Retina International seeks to
play an increasing role in defining what is globally-relevant in terms of how we
measure symptom impact and functionality, how we define disability and describe
adverse events, what is treatment tolerability? and what improves quality of life?.
The importance of defining patient-relevant outcomes in clinical trials for evaluating
ophthalmic medical drugs and devices cannot be understated. Participating in
evaluation processes is a responsibility Retina International enthusiastically accepts
and seeks to promote. On World Retina Day, Retina International, an umbrella group
of over 50 patient-led Vision organisations in 33 countries across all continents is
calling on its members to pledge support and play their part in expediting this critical
process.
“Retina International encourages patients to take every opportunity to inform
clinicians and researchers of the relevance of any clinical measures – it is the
patients, and only the patients, who can adequately describe the total impact of a
treatment in a visual world and functionality therein” said Christina Fasser –
President of Retina International. She added “Patients are becoming increasingly
educated in the development of their own healthcare. They understand their voice
must be heard if future generations are to benefit from treatments that deliver
meaningful outcomes leading to greater independence, quality of life and the ability
to fully participate in society”
Ends
For further information contact Christina Fasser at Retina International
Phone +41 (0)44 444 10 77 Fax +41 (0)44 444 10 70E-mail: cfasser@e-link.ch
www.retina.ch www.retina-international.org