REGARD Study Phase 2
Research type
Research Study
Full title
The REGARD Study - Improving healthcare provision for patients with inherited retinal disease: an evidence-based approach Phase 2: A prospective observational cohort study to explore the feasibility and acceptability of implementing the Regard Care Model into clinical practice
IRAS ID
131565
Contact name
Graeme Black
Contact email
Sponsor organisation
University of Manchester
Research summary
Retinal dystrophy accounts for 15% of working age adults with visual impairment, and genetic disorders account for over half of childhood visual disability. Finding genes that cause these conditions has been highly successful with major scientific benefits. However, this also creates a need for genetic testing to support the management of affected patients and families. Since 2005 we have developed a national service for genetic testing for inherited retinal dystrophies. This service is free to patients. However we have demonstrated an inequality of access to these services. In 2008, an expert working group (Moore and Burton 2008) confirmed these findings and recommended that research be undertaken to examine the most effective model of care provision for families with genetic eye diseases.
From results of the first phase, the research group have developed a patient-led, evidenced-based model for providing clinical services to families with inherited retinal dystrophy. The group carried out interviews and focus groups with patients and health professionals to create an optimum care model to be tested within an exploratory trial.
This care model will be implemented across 6 specialist genetics eye clinics in St Mary’s Hospital and Manchester Royal Eye Hospital, and evaluated to measure feasibility and acceptibility to patients and clinicians.REC name
North West - Haydock Research Ethics Committee
REC reference
13/NW/0590
Date of REC Opinion
24 Sep 2013
REC opinion
Favourable Opinion