World Retina Day Highlights Need For Patient Registries To Enable Development Of Treatments For Blindness

Media Release

September 27, 2014

WORLD RETINA DAY HIGHLIGHTS NEED FOR PATIENT REGISTRIES TO ENABLE DEVELOPMENT OF TREATMENTS FOR BLINDNESS

What: World Retina Day

When: Saturday, September 27, 2014

World Retina Day takes place on Saturday, September 27, 2014. This year’s event marks a time of unprecedented optimism in the global effort to find treatments and cures for inherited retinal diseases such as retinitis pigmentosa (RP), Stargardt disease, Usher syndrome, Leber congenital amaurosis, choroideremia, and other allied conditions that are thought to affect around 3,000 people in Ireland.

The first treatments are now emerging in the exciting fields of gene therapy, stem cell therapy, artificial vision and cell replacement therapy.

Reflecting on the last 20 years of progress in understanding retinal disease and the excitement at witnessing the increasing quantity of quality research being published every year, Retina International president Christina Fasser made comparisons with the last time the international patient community gathered in Paris. “Only six genes for inherited retinal diseases had been identified whereas now there are over 250, clinical trials commenced in 2006 and currently there are fifteen clinical trials being undertaken for different forms of retinal disease”.

Without question, medical, surgical, and technological progress in understanding and treating many inherited retinal disorders will deliver treatments and increase personal autonomy for many affected people worldwide in the next few decades.

Call for Patient Registries

On World Retina Day, Retina International, an umbrella group of patient-led organisations concerned with inherited retinal degenerations from all over the world, call on governments to establish patient registries. Without these registries potential treatments and cures cannot be further developed. Clinical trials face major financial and legislative difficulties and it must be the task of each country’s government to become involved in the process from proper genetic diagnosis and genotyping through to establishment of registries. If this issue is not addressed now millions of people around the world and future generations may never have access to treatments.

Avril Daly, CEO of Fighting Blindness (Ireland), a charity that funds research into treatments and cures for blindness, spoke about the importance of patient registries saying: “We echo the call from Retina International and call on the Irish Government to implement the recommendations of the National Rare Disease Plan For Ireland regarding the development of patient registries. For people living with rare and inherited conditions causing sight loss, the development of registries is essential to ensure patient access to relevant and appropriate clinical trials and expedite development of therapies. The development of a National Register of Inherited Retinopathies is the gateway to the restoration of vision for people in Ireland living with these conditions.”

It has taken the international retinal research community more then thirty years to reach this exciting point. With so many clinical trials ongoing and more approaching this vital stage in their development, patients now have a real hope of a brighter future.

Millions of adults and children are waiting for treatment for retinal inherited diseases and with treatment options becoming a reality, the time for action is now.

Fighting Blindness offers counselling and support to people affected by sight loss while acting as advocates in issues of health policy. The charity funds research in Ireland that is working towards the development of treatments and eventual cures for blindness. For more information, visit www.FightingBlindness.ie.

Ends

For more information, contact:

Caitríona Dunne, Communications Officer, Fighting Blindness

01 678 9004 / 085 191 6312 / caitriona.dunne@fightingblindness.ie