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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.

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Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

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Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

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Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

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INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

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