The HOLD Study
Research type
Research Study
Full title
Hearing From YOU: Research Opportunities for People with Learning Disabilities: The HOLD Study
IRAS ID
360590
Contact name
Hermione Price
Contact email
Sponsor organisation
Hampshire and Isle of Wight NHS Foundation Trust
Duration of Study in the UK
1 years, 0 months, 31 days
Research summary
People with learning disabilities are less likely to receive health care, see their GP and more likely to die prematurely compared to those without learning disabilities or the general population. They are typically all but excluded from clinical research because of exclusion criteria such as those excluding people who cannot read or write English or may have difficulty complying with the requirements of the protocol in full. In addition, funding formulas leave no room to make any adjustments for people with learning disabilities such as allowing more time for a blood test or informed consent to be taken or allowing additional visits to complete the requirements of the protocol. This means that some of the people with the greatest needs and therefore, the potential for greater benefit, are effectively being excluded from participating in clinical research.
Whilst literacy and social capabilities range a great deal amongst people with learning disabilities our aim is to better understand how we can include people with learning disabilities in all kinds of clinical research and what adjustments might be needed to allow this to happen.
We wish to undertake a series of scoping workshops some with people with learning disabilities, their carers and families and some with professionals across health and social care involved in providing care for people with learning disabilities to explore their thoughts about clinical research and the barriers and facilitators to participation. Our aim is to hold 3 scoping workshops for people with learning disabilities and their carers and families and two for professionals.REC name
South Central - Hampshire A Research Ethics Committee
REC reference
25/SC/0366
Date of REC Opinion
8 Dec 2025
REC opinion
Further Information Favourable Opinion