Research opportunity – have your voice heard

Research opportunity – have your voice heard

Date: 25 Sep, 2019  No Comments

COordiNated Care Of Rare Diseases (CONCORD) is a research study which aims to investigate how services are currently coordinated for rare conditions and how they should be coordinated in the future.

The study is funded by the National Institute for Health Research and is being led by researchers at University College London, in collaboration with Genetic Alliance UK and others. They are currently looking for patients, carers and healthcare professionals to share their priorities and views about the coordination of care for rare conditions, via an online survey. The survey will take around 30 minutes to complete. The findings will be used to make recommendations with the aim of influencing policy.

The aim of the study is to investigate how care of people with rare diseases is coordinated in the UK, and importantly, how patients and families affected by rare diseases, and the healthcare professionals who treat them, would like care to be coordinated.The detailed objectives of the study are:

  1. To undertake a review of published evidence to identify in detail what ‘coordinated care’ means, what the components of coordinated care are, and how coordinated care for people with rare diseases might be similar or different to coordinated care for people with other conditions.
  2. To understand whether and how care of people with different rare diseases is coordinated in the UK.
  3. To analyse preferences for different types of coordination by patients and families, and health care professionals.
  4. To develop a detailed map (a ‘taxonomy’) of all possible types of care coordination, based on what currently happens and what patient and professional preferences are.
  5. To calculate the costs of the types of coordinated care identified in the taxonomy.
  6. To work closely with patients and families throughout the project and disseminate findings widely.

The CONCORD research team will do this using interviews, focus groups and workshops (qualitative research) and a survey (quantitative research). We will hold events for healthcare professionals, people who decide how services are provided (commissioners), and patients and families, so they can tell us how to make our findings helpful to them.

They are involving patients and family members throughout the study, and establishing a patient advisory group to advise on recruiting participants and interpreting the findings. The advisory group will be run by Lara Bloom (Ehlers-Danlos Society) and Kerry Leeson-Beevers (Alstrom Syndrome UK) who are also members of the research team.

Have your voice heard and complete the survey via this link

Further information about the study can be found through the Genetic Alliance website:

Information source: Genetic Alliance website