Hereditary gastrointestinal polyposis syndromes Rare Disease Collaborative Network consensus statement agreed at the RDCN meeting Birmingham 17th February 2022

Clark, Susan, Cuthill, Vicky, Hawkins, Jackie, Hyer, Warren, Latchford, Andy, Sinha, Ashish, Din, Farhat, Beggs, Andrew, Desai, Anant, Morton, Dion, Hitchen, Debbie, Hill, James, Lalloo, Fiona, Newton, Katy, Pugh, Sarah, Dolwani, Sunil ORCID: https://orcid.org/0000-0002-3113-5472, Hargest, Rachel ORCID: https://orcid.org/0000-0001-9830-3832, Horwood, James, Ramaraj, Raji, Rogers, Mark, Collins, Paul, McNichol, Frances, Beck, Nicholas, Side, Lucy and McDermott, Frank 2023. Hereditary gastrointestinal polyposis syndromes Rare Disease Collaborative Network consensus statement agreed at the RDCN meeting Birmingham 17th February 2022. BJC Reports 1 (1) , 10. 10.1038/s44276-023-00011-z

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Abstract

NHS England set out in the Implementation Plan for the UK Strategy for Rare Diseases (https://www.england.nhs.uk/wp-content/uploads/2018/01/implementation-plan-uk-strategy-for-rare-diseases.pdf) that it would develop and implement Rare Disease Collaborative Networks (RDCNs), with the definition of a RDCN being a ‘recognised network of member providers, each of which has demonstrable research-active interest in a rare/very rare disease, the aim of the network being to improve patient outcomes’. The network is composed of Rare Disease Collaborative Centres. A Rare Disease Collaborative Centre (RDCC) is a ‘provider that has been recognised as having a demonstrable research-active interest in a rare/very rare disease and who works with other recognised providers in a network to improve patient outcomes’. This initiative is also in line with the NHS England Board paper ‘12 Actions to Support and Apply Research in the NHS’ discussed on 30 November 2017 (https://www.england.nhs.uk/wp-content/uploads/2018/05/12-actions-to-support-and-apply-research-in-the-nhs.pdf).

Item Type:	Article
Date Type:	Published Online
Status:	Published
Schools:	Medicine
Additional Information:	License information from Publisher: LICENSE 1: URL: http://creativecommons.org/licenses/by/4.0/, Type: open-access
Publisher:	Nature Publishing Group UK
Date of Acceptance:	12 July 2023
Last Modified:	27 Aug 2023 16:43
URI:	https://orca.cardiff.ac.uk/id/eprint/161503

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