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:

  • Julian Walker, Genetic Alliance UK - *National Coordinator*

Health professionals:

  • Prof. Panos Kanavos, London School of Economics and Political Science – LSE Health
  • Elena Nicod, London School of Economics and Political Science – LSE Health - *National- Coordinator*

Patient organizations:

  • Clare Jacklin – National Rheumatoid Arthritis Society
  • Dr Marita Pohlschmidt – The Muscular Dystrophy Campaign
  • Georgie Robinson - The Haemophilia Society
  • Jackie Waters – The Prader-Willi Syndrome Association
  • Jo Osmond - The Cystic Fibrosis Trust
  • John Dart - DEBRA
  • Liz Bevins – The Raynaud’s and Scleroderma Association
  • Rare Disease UK
  • Shelley Ross – The Histiocytosis Research Trust
  • The Scleroderma Society
  • Tracy Rendall- Scottish Network for Arthritis in Children

Copyright 2010 BURQOL - RD. All rights reserved