Skip to main content

Table 1 Study outcomes at both sites

From: 10th European Conference on Rare Diseases & Orphan Products (ECRD 2020)

Priorities for improvement Quality improvement interventions
UK Site
a. Communication at the point of testing 1. Principles and recommendation to improve communication with families
2. Use of film for workforce engagement and professional development (on-going)
b. Named person for follow up and questions 3. Job description: Liaison Officer for rare/undiagnosed diseases
Czech Site
a. Follow-up care 1. Follow up appointment within 1 month
b. Prevention of feeling of guilt 2. Workshop on families’ experience of guilt and (self-)blame
3. Educational resources at the Department
4. Referral pathways for families in need of specialist psychosocial support (on-going)
c. Environment of the Department 5. Environmental improvements (on-going)