Hidden Costs Feasibility Study
Research type
Research Study
Full title
The Hidden Cost of Rare Diseases: The Impact on Patients and the NHS (Feasibility Study)
IRAS ID
164610
Contact name
Amy Hunter
Contact email
Sponsor organisation
Genetic Alliance UK
Duration of Study in the UK
1 years, 4 months, 1 days
Research summary
There is much anecdotal, and some systematic, evidence of the costs to patients and their families, and to the NHS, of managing undiagnosed and diagnosed rare conditions. The journey to diagnosis can be long and seemingly inefficient, and patient care can suffer in the absence of a diagnosis. Even with a diagnosis, the complexity of many rare conditions is challenging to manage, especially where no coordinated approach to health services exists. Although an increasing number of rare diseases are managed through coordinated services (e.g. through the specific role of a care coordinator or through the provision of multi-disciplinary clinics), most conditions are still not managed in this way.
Researchers at Genetic Alliance UK will conduct a feasibility study (which will run until February 2016) to prepare the ground for a full scale research project exploring the impact of coordinating services for rare diseases. In this current study we aim to assess the feasibility of researching the following questions:
• What is the economic cost of coordinating versus not coordinating rare disease services within the NHS, including services for those without a diagnosis? The question includes costs to the NHS and to patients themselves.
• Is there a psychosocial benefit to patients and their families of coordinating rare disease services within the NHS, and if so how is this manifested?
Focusing on a limited number of rare conditions, we want to better understand how services are currently coordinated for those patients, identify the important costs and benefits in relation to the coordination of services and consider how these outcomes might be measured in a practical way.
REC name
Social Care REC
REC reference
15/IEC08/0020
Date of REC Opinion
16 Mar 2015
REC opinion
Favourable Opinion