Priorities for Inherited Retinal Disease research

At a workshop held on 2 May 2013 attended by patients and eye health professionals the following top 10 priorities for inherited retinal disease research were identified:


  1. Can a treatment to slow down progression or reverse sight loss in inherited retinal diseases be developed?
  2. How can sight loss be prevented in an individual with inherited retinal disease?
  3. Is a genetic (molecular) diagnosis possible for all inherited retinal diseases?
  4. What factors affect the progression of sight loss in inherited retinal diseases?
  5. What causes sight loss in inherited retinal diseases?
  6. What is the most effective way to support patients with inherited retinal disease?
  7. Can the diagnosis of inherited retinal diseases be refined so that individuals can be given a clearer idea about their specific condition and how it is likely to progress?
  8. What is the relationship between sight loss and mental health for people with inherited retinal diseases?
  9. Would having a treatment for an inherited retinal disease preclude a patient from having another treatment?
  10. With regard to inherited retinal disease what is the role of pre-natal and pre-implantation diagnosis in helping parents make informed choices?