Call for Development of National Patient Registries

The annual Retina Conference is an important opportunity for Fighting Blindness to highlight vital issues relating to vision health and the pursuit of treatments and cures for sight loss.

At Retina 2015, we called on the Government to support our National Patient Registry for Rare Inherited Retinal Diseases – Target 5000 – and to use it as a model to capture more common eye diseases by developing a National Registry of Patients with Eye Disease.

Patient registries are of critical importance to expedite the process of therapeutic development and ensure that people have equitable and timely access to cutting-edge treatments and therapies as they emerge.

To be able to benefit from future treatments, people affected by sight loss will need to know their precise diagnosis, so that the specific problem can be repaired. In Target 5000, Fighting Blindness has already put in place a register for people with rare inherited eye conditions which identifies the genetic cause of a person’s condition, but we now need to go one step further. Target 5,000 offers an excellent model and infrastructure on which to develop a National Registry of Patients with Eye Disease, including the more common conditions such as age-related macular degeneration. We urge the Government to build on its success. We call on the Minister for Health to make this a public health priority and put in place the structures now so that patients can access new therapies as soon as new therapies become available.

You can read the full Retina 2015 Call for Registries here.