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CONCORD: CoOrdiNated Care of Rare Diseases

The CONCORD (CoOrdinated Care Of Rare Diseases) study is looking at how care services for people with rare diseases are coordinated in the UK, and how people affected by rare diseases and health care professionals who treat rare diseases would like them to be coordinated.  It is a collaboration between patients and carers affected by rare conditions, health care professionals with expertise in rare conditions, and health services researchers.

What problem is CONCORD trying to address?

Poor coordination of care is a problem faced by many people affected by rare diseases, and is an important and common concern among patients and families. Poorly coordinated care means:

  • Some people have access to specialist centres, some do not.
  • Many patients do not have a care coordinator or advisor.
  • Patient information may not be shared effectively between services meaning there may be gaps in care.
  • Patients and families frequently have to attend multiple clinics and travel significant distances to them.

 What are we doing?

  • Identifying key features of “coordinated care” for people with rare diseases, and examining whether these are similar to coordinated care for people with other conditions.
  • Finding out how care for people with rare diseases is coordinated in the UK.
  • Analysing what aspects of coordinated care matter most to patients, families, and health care professionals.
  • Developing and refining ways of classifying models of care coordination.
  • Calculating the costs of these models of coordinated care.
  • Working closely with patients and families throughout the project and disseminating findings widely.

To learn more about the study, please see our Study Protocol or visit Genetic Alliance website.

Principal Investigator:

Professor Stephen Morris

Project Staff

Lara Bloom, The Ehlers-Danlos Society

Professor Lyn Chitty, London North Genomic Laboratory Hub, Great Ormond Street NHS Foundation Trust and UCL Great Ormond Street Institute of Child Health

Professor Naomi Fulop, University College London

Ms Emma Hudson, University College London

Dr Amy Hunter, Genetic Alliance UK

Professor Joe Kai, University of Nottingham

Dr Larissa Kerecuk, Birmingham Women’s and Children’s NHS Foundation Trust

Ms Maria Kokocinska, Birmingham Women’s and Children’s NHS Foundation Trust

Mrs Kerry Leeson-Beevers, Alström Syndrome UK

Dr Angus Ramsay, University College London

Dr Amy Simpson, Genetic Alliance UK

Professor Alastair Sutcliffe, UCL Great Ormond Street Institute of Child Health

Dr Holly Walton, University College London

Collaborators

Patient and Public Involvement Advisory Group

CONCORD is supported by a Patient and Public Involvement Advisory Group (PPIAG), which is a group of patients and carers affected by rare conditions who:

 Ensure the study meets needs of those affected by rare conditions

  • Share their personal knowledge & experiences
  • Develop study resources and participant information
  • Help with patient recruitment
  • Help disseminate study findings

Funder:

National Institute for Health Research Services & Delivery Research Programme (see NIHR project page

Start Date & Duration:

June 2018 - November 2020

Contact:

General Enquiries: concordstudy@ucl.ac.uk

Prof Stephen Morris (Chief Investigator): sm2428@medschl.cam.ac.uk

Pei Li Ng (Project Manager): pei.ng@ucl.ac.uk

 

Useful links