What would you like to see implemented in a Centre of Excellence? (UK)

What would you like to see implemented in a Centre of Excellence?

Rare Disease UK is undertaking a project which will capture the requirements of those affected by a rare disease and all who support them and develop a clear understanding of a Centre of Excellence.

The consultation by the Government on the UK Plan for Rare Diseases recognises the need to have Centres of Excellence and outlines several key characteristics that must be present in order to be identified as an expert centre. These include:

Coordinated Care;

Adequate caseload for expertise (e.g. a sufficient number of patients);

Not dependent on a single clinician;

Arrangements for transition from children’s to adults’ services;

Engaged with people with rare conditions;

Research active

RDUK is in agreement with these points; however, we believe having input from our members in the development of these centres is essential.

A key part of this research involves gathering your views and experiences.

We would be grateful if you could complete our survey about your experiences and thoughts on Centres of Excellence. Even if you are not associated with a Centre of Excellence, your thoughts are extremely important in helping us with the development of this project.

Please can you assist us by informing your networks about the surveys and encouraging them to respond?

If you are living with a rare condition, or you are a carer or have been a carer in the last two years, you can complete the survey here: https://www.surveymonkey.com/s/centresofexcellence

If you are an industry or patient organisation representative, a clinician or academic researcher, you can complete the survey here: https://www.surveymonkey.com/s/rdukCofE

The surveys should take approximately 10 minutes to complete. The closing date is 20th May.

If you would like more information on the project, please contact Devinder Degun, Research Officer on ■■■■■■■■■■■■■■■■■■■■■■■■■■■ or on 020 7704 3141.