REGARD phase 2 study

Full Study Name

REGARD phase 2 study: Improving healthcare provision for patients with inherited retinal disease: an evidence-based approach


Fight for Sight


University of Manchester

Local Principal Investigator

Prof Graeme Black

Study Status


Main Aims

An observational study with qualitative questionnaires and an economic evaluation of a proposed new model of care for people with inherited eye conditions (The Regard Care Model). The overarching aim of the Regard Care Model is to improve outcomes for people affected by inherited eye conditions. The study will collect prospective data on patient outcomes and healthcare resource use to understand the impact of implementing the Regard Care Model in NHS clinical practice. In addition, the acceptability and feasibility of the Regard Care Model in routine NHS practice will be assessed from both care providers’ and service users’ perspectives.

Inclusion Criteria
  1. Patients, including parents of affected children, will be eligible for inclusion if ≥18 years of age on date of initial referral to genetic ophthalmology service or ≥18 years of age on date when follow-up appointment was offered
Exclusion Criteria
  1. Participants will not be eligible for inclusion if <18 years of age or if written informed consent cannot be obtained
  2. Patients without the ability to complete patient reported outcome measures, such as patients with learning difficulties or patients with insufficient English.