Welcome to the survey of BURQOL-RD project aimed at collecting data on socio economic costs and health-related quality of life in patients with rare diseases and their caregivers. These data will be used to improve the situation of affected persons through better understanding of their needs, concerns and quality of life.
This survey is anonymous. Records with your answers do not contain any identifying information about you.
You can find more information and the first Spanish results here.
Cystic fibrosis
Survey closed
Prader-Willi Syndrome
Survey closed
Haemophilia
Survey closed
Epidermis bullosa
Survey closed
Duchenne Muscular Dystrophy
Survey closed
Fragile X Syndrome
Survey closed
Scleroderma
Survey closed
Mucopolysaccharidosis
Survey closed
Juvenile idiopathic arthritis
Survey closed
Histiocytosis
Survey closed
Thank you for your collaboration.
ACKNOWLEDGEMENT for our esteemed partners (in alphabetical order) who has supported the recruitment of patients and carers in the United Kingdom:
Recruitment coordination:
Health professionals:
Patient organizations:
Copyright 2010 BURQOL - RD. All rights reserved