CONCORD: CoOrdiNated Care of Rare Diseases

The CONCORD (CoOrdinated Care Of Rare Diseases) study looked 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.

Publications

Full study report:

Morris S, et al. Coordinated care for people affected by rare diseases: the CONCORD mixed-methods study. Health Soc Care Deliv Res 2022; 10(05)

Headline findings:

Research findings:

• Walton H, et al. Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study. Orphanet Journal of Rare Diseases 2022; 17(171)

• Walton H, et al. Development of models of care coordination for rare conditions: A qualitative study. Orphanet Journal of Rare Diseases 2022; 17(49) [WATCH SHORT ANIMATION]

• Simpson S, et al. How are patients with rare diseases and their carers in the UK impacted by the way care is coordinated? An exploratory qualitative interview study. Orphanet Journal of Rare Diseases 2021; 16(76)

• Walton H, et al. Defining Coordinated Care for People with Rare Conditions: A Scoping Review. International Journal of Integrated Care 2020; 20(2)

Other resources:

• CONCORD Flow chart - demonstrating how taxonomy options can be used to develop a taxonomy of different ways of coordinating care for rare conditions
  • Flow chart (
    File

    appendix_4._concord_flow_chart.pdf
    )
  • Cover note (
    File

    appendix_5._cover_note_for_concord_flow_chart.pdf
    )
  • Hypothetical models of care coordination (
    File

    appendix_6._hypothetical_models_of_care_coordination.pdf
    )

Please cite this article if you wish to use the downloads: Walton, H., Simpson, A., Ramsay, A.I.G. et al. Development of models of care coordination for rare conditions: a qualitative study. Orphanet J Rare Dis 17, 49 (2022). https://doi.org/10.1186/s13023-022-02190-3

• ​​​​​​Illustration summarising key findings 

• Animation summarising key findings

Study Team: 

Principal Investigator: Professor Stephen Morris, University of Cambridge

• Professor 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 of Cambridge

• 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

• Ms Pei Li Ng, University College London

• 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

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, Award ID: 16/116/82 (see NIHR project page)

Project Duration: June 2018 - November 2020 (COMPLETED)

Contact: concordstudy@ucl.ac.uk, Prof Stephen Morris (Chief Investigator): sm2428@medschl.cam.ac.uk; Pei Li Ng(Project Manager): pei.ng@ucl.ac.uk

February 2023: Watch our new animation to learn more about models of care for people with rare conditions in the UK

PUBLICATIONS

April 2022: Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study; by Walton H. et al

March 2022

Full project report: Coordinated care for people affected by rare diseases: the CONCORD mixed-methods study

February 2022: Development of models of care coordination for rare conditions: A qualitative study; by Walton H. et al 

February 2021: How are patients with rare diseases and their carers in the UK impacted by the way care is coordinated? An exploratory qualitative interview study; by Simpson A. et al. 

June 2020: Defining Coordinated Care for People with Rare Conditions: A Scoping Review; by Walton H. et al.