Wilson's Disease Support Group - UK

Striving to promote the wellbeing of patients with Wilson's disease, their families and friends

Patient Survey Invitation - Orphalan (NOV 2023)

Open to UK WD patients who have not received a liver transplant

Patient Survey Invitation - Orphalan (NOV 2023)

Open to WD patients who have not received a liver transplant

WDSG-UK has been asked by Orphalan, a Pharmaceutical Company, to provide access to the following patient questionnaire on our website. The purpose is to better inform them of how it is to live with WD on a daily basis. The questions have been agreed by WDSG-UK with Orphalan and we are assured that the questionnaire is completely anonymous and no identifiable information is collected.

If you live in the UK and are a WD patient who has not received a liver transplant, perhaps you would please consider completing it. Do not share the link with anybody. There is no obligation to finish the questionnaire, but please respond honestly to the best of your ability. The results of the questionnaire may be published in a scientific journal or presented to health professionals in a congress, for example.

Orphalan writes,

Patient Questionnaire – Briefing for use.

Purpose of the questionnaire and the key details:

Questionnaire link : https://www.surveymonkey.co.uk/r/9VZZX55 

This patient questionnaire has been designed together with the Wilson Disease Support Group - UK (WDSG-UK) to ask a series of 35 general questions to patients in the UK who are being treated for Wilson's disease (WD). It aims to capture data on adherence and everyday challenges of living with WD and having to take lifelong therapy.

The questionnaire takes around 10 mins to complete, and data will be collated on the Survey Monkey website. The survey will run for no longer than 6 months and be dependent on the number of surveys completed. A minimum of 30 responses is the aim.

Under no circumstances should any patient identifiable information be shared with Orphalan.

Thank you.