PREM for individuals participating in IRD observational research
Research type
Research Study
Full title
Patient reported experience measurements from individuals with Inherited Retinal Disorders involved in observational research
IRAS ID
314636
Contact name
Malena Daich Varela
Contact email
Sponsor organisation
University College London, Joint Research Office, UCLH/UCL Joint Research Office
Clinicaltrials.gov Identifier
148977, Sponsor reference number
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Inherited retinal dystrophies (IRD) are a complex group of conditions with a wide genotypic and phenotypic spectrum. These rare diseases are characterized by a suboptimal visual experience which can significantly impact patients’ ability to function. They can be stationary or progressive, and patients are generally diagnosed between childhood and early adulthood.
Patients that come to Moorfields Eye Hospital clinics and meet the eligibility criteria for ongoing studies are generally invited to take part in research, aside from their routine clinical care. Patients’ enrollment can sometimes be an act of selflessness where they volunteer their time with the aim of contributing to science and helping future generations, rather than a true gain for them. The goal of this project is to develop a patient reported experience measurements (PREM) questionnaire to assess our patients’ experience while participating in our IRD natural history studies.REC name
South Central - Oxford C Research Ethics Committee
REC reference
22/SC/0256
Date of REC Opinion
22 Jul 2022
REC opinion
Favourable Opinion