Coordinated Care of Rare Diseases Study at UCL
24 March 2021
Coordinated Care of Rare Diseases Study at UCL
CONCORD (Coordinated Care of Rare Diseases) is a research study that looks at how the care of people with rare diseases is coordinated in the UK and how patients, families and healthcare professionals who treat rare diseases would like care to be coordinated. The study is funded by the National Institute for Health Research and is being led by researchers at University College London, in collaboration with NHS Institutions and charitable partners. Nerve Tumours UK is not involved in any content or development of the study, however, we do support their research.
The Findings of the study cover the following:
- What does coordinated care mean?
- Is care coordinated in the UK, and how?
- What type of care coordination do patients, families and professionals prefer?
- What are the different ways that care can be coordinated for rare conditions?
- It also looked at how patients and the public have been involved in CONCORD and overarching key findings from CONCORD and next steps.
Watch the Webinar and download the papers below.
Filter News
Nerve Tumours UK takes part in the Genomics Showcase
Find out how you can take part in the Genomics showcase – sign up for free!
Read MoreKate “NF1 Mummy” Your Questions on parenting answered: World Neurofibromatosis Day 17 May 2021
Have you got questions about your child’s NF diagnosis? Send them into us for World NF Awareness Day
Read MoreJo’s 160 Mile walk for NTUK!
Read Jo's Story as she prepares to take on a 160 mile epic walking challenge for Nerve Tumours UK.
Read MoreNF2 & Identity Research Study
If you have NF2, Suzi want's to hear from you! Find out more about her research study relating identity & NF2
Read MoreChallenge 100 – Everyone’s invited
Take on 100 of anything you can think of and fundraise to support our NF community!
Read MoreA very “Happy Easter” to you all!
A message from Karen, our Charity Director, wishing you all a very Happy Easter!
Read MoreStuart & William’s Story: Turning blue for World NF Month
Check out Stuart & William's creative fundraiser for World Neurofibromatosis Awareness Month
Read MoreCoordinated Care of Rare Diseases Study at UCL
Find out the results to the Coordinated Care of Rare Diseases Study at UCL
Read MoreWho is exempt from wearing a face mask? UK exemptions rules explained - and how to get a hidden disabilities exemption
Find out the up to date information on face mask rules in your area
Read More