CONCORD: COordiNated Care Of Rare Diseases v1.0

• Research type

  Research Study

• Full title

  CONCORD: Coordinated care of rare diseases

• IRAS ID

  254400

• Contact name

  Stephen Morris

• Sponsor organisation

  University College London

• Clinicaltrials.gov Identifier

  Z6364106/2018/08/24 , Data Protection Registration Number

• Duration of Study in the UK

  1 years, 10 months, 30 days

• Research summary

  A rare disease is one that affects fewer than 5 people in 10,000 in the general population. There are over 8,000 rare diseases; if all the people suffering from these were added together, the total in the UK would be more than 3.5 million people.

  Rare diseases can be severe, disabling and affect more than one part of the body. As a result, patients often require treatment from different experts. Depending on the disease and where they live, patients may receive treatment at specialist clinical centres, which bring together various professionals so patients can see them all at once. It is common to have to visit different hospitals several times for treatment, which can be inconvenient, costly, and reduce the chance that people will go to appointments. Also, for most people with rare diseases some care is provided nearer to home by their local hospital/GP. This can cause problems because coordination between different organisations can be poor. Some people have access to named care coordinators to help, but not all.

  In 2013 the UK governments published the UK Strategy for Rare Diseases. The Strategy highlighted that it was essential to coordinate care for people with rare diseases, however it also emphasised that further research is needed.

  Therefore this study will:

  1. Run a survey of people affected by rare diseases (patients and carers) to ask how care is coordinated.
  2. Include in this survey questions about how people would prefer their care to be coordinated.
  3. Conduct interviews, focus groups, and workshops to develop a way of classifying how care of rare diseases can be coordinated.
  4. Undertake a cost analysis to calculate how much these different ways of coordinating care might cost to run and set-up/implement.

• REC name

  London - Surrey Borders Research Ethics Committee

• REC reference

  19/LO/0250

• Date of REC Opinion

  28 Feb 2019

• REC opinion

  Favourable Opinion