Investigation of the natural history of inherited retinal dystrophies
Research type
Research Study
Full title
An investigation into the natural history of inherited retinal dystrophies.
IRAS ID
297809
Contact name
Andrew Browning
Contact email
Sponsor organisation
The Newcastle upon Tyne Hospitals NHS Foundation Trust
Duration of Study in the UK
5 years, 0 months, 2 days
Research summary
This study aims to formally establish the natural history of patients attending the retinal genetics clinic at the Newcastle Eye Centre who have an inherited retinal dystrophy (IRD). The cause of the IRD may be known from previous genetic testing as part of their normal care. The establishment of the natural history will be accomplished by the ongoing prospective measurement of a range parameters of ocular structure and function undertaken as part of their routine eye care. These findings will be combined with any retrospective data held in their medical records in order to provide a more accurate prognosis for the patient as well as increasing our knowledge of the genotype/ phenotype correlation of specific genetic mutations. As many of these disorders and genetic mutations are poorly understood, any significant learning points from the work may be presented at appropriate meetings or submitted for publication.
REC name
Wales REC 5
REC reference
21/WA/0190
Date of REC Opinion
1 Jun 2021
REC opinion
Favourable Opinion