The hospital trust is the first in the UK to lead on a research project to understand the impact of sickle cell disease on eyesight.

Central Middlesex Hospital (CMH) won the backing of the National Institute for Health and Care Research (NIHR) to fund the large-scale study.

It is the first time the NIHR has funded a project on sight loss caused by sickle cell retinopathy which is described by Christiana Dinah, the hospital’s Director of Research and Innovation, as an area both "under-represented and of great need."

CMH has teamed up with Moorfields Eye Hospital and 14 other areas around the UK with large Black and Asian communities including Bristol, Manchester and Leeds to form the Sickle Eye Collaborative.

The two-year project is supported with an unrestricted grant from Roche UK and builds on a legacy of innovation in sickle cell disease at the hospital which set up the first specialist sickle cell centre in the UK in 1979.

Christiana Dinah said: “The poor level of funding for sickle cell disease research, both in the UK and globally, is well documented so this is welcome news.

“The NIHR infrastructure puts us in a really good position to conduct this wide-scale study which will not only benefit the UK population and western countries but also countries like sub-Saharan Africa and India.

“The main goal of the Sickle Eye Project is to build an accurate picture of how many of the UK’s 15,000 strong sickle cell community have suffered visual loss from sickle cell retinopathy. This will include studying the various stages of the disease in affected individuals and the potential influence current medications for sickle cell disease have on limiting visual loss.

“People often don’t notice early signs of sickle cell retinopathy because it initially effects peripheral vision."

However, the disease can also progress from small blood vessels at the back of the eye being blocked, to abnormal blood vessels developing at the back of the eye to the possibility of a bleeding or the retina being pulled off, known as a retinal detachment. 

The Sickle Eye Project will involve a representative body of 600 participants who will have eye scans and brief interviews.

The results will be used to better plan services for people at risk of sight loss as well as design future studies that improve care for people with sickle cell retinopathy.