MAHSC partner has leading role in new Europe-wide rare disease network

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MAHSC partners, Central Manchester University Hospitals NHS Foundation Trust (CMFT) and The Christie NHS Foundation Trust, are contributing their leadership and clinical expertise to a new, Europe-wide network designed to tackle rare and complex diseases.

The European Reference Networks (ERNs), formally launched on 9 March, provide a virtual link between medical specialists in different countries for the diagnosis and treatment of these conditions.

Established by the European Commission, the 24 ERNs each have a different health focus, ranging from childhood cancer to immunodeficiency.

CMFT is one of only four UK hospital trusts to be leading an ERN.

Professor Jill Clayton-Smith, CMFT’s Consultant Clinical Geneticist, is the ERN Network Coordinator for congenital malformations and rare intellectual disability (ERN ITHACA).

Between 6,000 and 8,000 rare diseases affect an estimated 30 million people in the European Union (EU) and, frequently, a lack of specialist knowledge means patients miss out on diagnosis and treatment options in their own country.

The ERNs offer patients, in any EU country, the opportunity to have their case reviewed by experts in the field. A hospital consultant can, with their patient’s consent, refer their case for discussion to the relevant ERN.  The ERN will then convene, in many cases using a dedicated IT platform and telemedicine tools, a virtual advisory board of specialists to review the patient’s diagnosis and management.

‘By consolidating knowledge scattered across countries, ERNs facilitate access to a much larger pool of expertise’ said Professor Clayton-Smith. ‘This will better the chances of patients receiving an accurate diagnosis and advice on the most suitable treatment for their specific condition.

‘ERNs will deliver other benefits as well. For example, in the ERN I am leading, our main aims also include: sharing and developing guidelines for expert patient care and patient registries, introducing better training for health professionals and enabling more collaborative research.’

The Christie is also driving progress in an ERN focusing on rare urogenital diseases and conditions (ERN eUROGEN).

The trust’s Director of Surgery and Consultant Urological Surgeon, Mr Vijay Sangar, is leading a workstream, within this ERN, looking at rare urogenital cancers. Activity will focus on improving education, clinical expertise and research, initially in penile cancer, abdomino-perineal sarcoma and testis cancer.

‘In time the workstream’s focus will expand with collaboration from other ERNs. There continues to be significant hurdles to improving care for rare cancer patients in most member states, this ERN initiative will drive change to address that across the continent’ said Mr Sangar.

In totalCMFT and The Christie are involved in providing clinical support to 10 out of the 24 ERNs.  To see who is involved click here

This makes the city one of the UK’s largest contributors of medical know-how to the network, which includes 900 medical teams in 300 hospitals across 26 countries.

It is the first time a formal structure of voluntary collaboration between healthcare providers across the EU has been created for the direct benefit of patients.

‘Manchester’s representation in nearly half of the ERNs shows the level of MAHSC partners’ expertise’ said Professor Peter Trainer, MAHSC Clinical Director. ‘The ERN model is an ambitious undertaking that will improve the care of patients and enable international research collaborations to find new treatments. Manchester will play a prominent part in this pan-European activity.’

It is expected that ERNs will lead to improvements in service delivery, working systems, patient pathways, clinical tools and the earlier adoption of scientific evidence. They will also act as focal points for medical training and clinical research.

An explanatory brochure on the ERNS is available here

 

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