Co-ordinated care for people affected by rare diseases: the CONCORD mixed-methods study

• Main Authors: Stephen Morris (Author), Emma Hudson (Author), Lara Bloom (Author), Lyn S Chitty (Author), Naomi J Fulop (Author), Amy Hunter (Author), Jennifer Jones (Author), Joe Kai (Author), Larissa Kerecuk (Author), Maria Kokocinska (Author), Kerry Leeson-Beevers (Author), Pei Li Ng (Author), Sharon Parkes (Author), Angus IG Ramsay (Author), Amy Simpson (Author), Alastair Sutcliffe (Author), Christine Taylor (Author), Holly Walton (Author)
• Format: Book
• Published: NIHR Journals Library, 2022-03-01T00:00:00Z.
• Subjects: article
• Online Access: Connect to this object online.

Background: A condition is defined as rare if it affects fewer than 1 in 2000 people in the general population. Limited evidence suggests that care is poorly co-ordinated for people affected by rare conditions. Objectives: To investigate if and how care of people with rare conditions is co-ordinated...