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What should a Centre of Excellence for rare diseases look like?

In 2009, the UK supported an EU recommendation calling on each Member State to adopt a rare disease plan by the end of 2013. Centres of Excellence, where treatment, expertise and research come together, were to be a central part of the plan. But as the UK develops its strategy for rare diseases ahead of the end of the year deadline, there are still lots of questions about what Centres of Excellence really are and what they should do, and what their role might be in supporting research into rare conditions.  Rare Disease UK has set out to answer some of these questions in a report published yesterday.

So what is a Centre of Excellence?

There isn't a uniform definition of a Centre of Excellence, in fact there are a range of names for these centres including ''Centre of Reference', 'Centre of Expertise', 'Reference Centre' and 'Expert Centre'. And these centres can be both virtual with a network of experts across different hospitals or physical with their own building. They are seen as a central part of joining up care, treatment and research to deliver these services effectively for people with rare diseases.

Following consultation, the UK government has drawn up six key criteria for Centres of Excellence:

  • Coordinated care;
  • Adequate caseload for expertise;
  • Not dependent on a single clinician;
  • Arrangements for transition from children’s to adults’ services;
  • Engaged with people with rare conditions;
  • Research active.

In their report published today, Rare Disease UK sets out to build on these criteria to propose what a Centre of Excellence should look like to deliver the most for people with rare diseases.

Informed by surveys of patients and clinicians, interviews and stakeholder events, Rare Disease UK's report supports these criteria, elaborating on these and proposing two further criteria. There is strong support for these centres to be active in research, supporting registries to collect and share information safely and securely to help researchers better understand conditions. They also include an increased focus on the role of these centres in education and training.

Coordinated care. The provision of a named care coordinator to every patient with a rare condition is an important component of coordinated care. This should be augmented with good quality communication and coordination with patients’ local healthcare providers.

Adequate caseload for expertise. This is a key requirement for the sustainability of a Centre of Excellence, and goes hand-in-hand with the following criterion. This critical mass of patients not only supports the sustainability of care provision, but also facilitates other activities of a Centre of Excellence such as research.

Not dependent on a single clinician. This criterion was supported by our findings, and is vital for the sustainability of Centres of Excellence.

Arrangements for transition from children’s to adults’ services. This is a key issue for those affected by childhood onset rare conditions. This is an issue that affects all care provision, within and without Centres of Excellence, and we have purposely left discussion of this for our next report, which will cover transition both between paediatric services and adult services and between adult services and geriatric services in the UK.

Engaged with people with rare conditions. This criterion needs to cover our three recommendations regarding the use of a Centre of Excellence as an information hub, a location for peer interaction and that Centres of Excellence should work with patient organisations.

Research active. The Department of Health in England’s final criterion is supported by our work. Specifically the benefits of locating research in a Centre of Excellence were recognised and the importance of recording and sharing information collected either through their own registry or through participation in a national registry.

Education and training for medical professionals. Education and training is an important component of the sustainability of a Centre of Excellence. Strong links need to be made in both directions between education providers and Centres of Excellence.

Membership of international networks of excellence. Where applicable it is vital that Centres of Excellence do not work in isolation. Exchange of best practice leads directly to high quality care and high quality research with benefits for those affected by rare conditions and health services.

And to ensure each Centre of Excellence is offering these, the report suggests that NHS national commissioning bodies should designate and monitor Centres of Excellence in the UK, supporting them as they develop.

What next?

The UK government has until the end of 2013 to publish the UK strategy for rare diseases. Each nation of the UK will then need to develop implementation.