Complementary and alternative medicine (CAMs) for rare diseases survey

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Introduction to survey

 

This survey is to improve understanding of what complementary and alternative medicines (CAMs) are currently used by rare disease patients in Northern Ireland and how effective people have found these therapies to be. This survey should take about 15 minutes to complete.

Results from this survey will be anonymously collated and used to raise awareness of the potential advantages and disadvantages of CAMs for individuals with rare disease(s). Ultimately, we hope that this will help patients, carers and healthcare professionals to make more informed decisions when considering CAMs for symptom management or treatment of a rare disease. We are very interested to hear from rare disease patients, carers, family members, healthcare professionals working with rare disease.

We very much appreciate your contribution and the time you will have taken to complete this survey. If you have any further questions about the survey, please contact the Queen’s University Belfast (QUB) Rare Disease team (raredisease@qub.ac.uk) with the subject heading ‘CAM Survey’. If you are seeking support for a rare disease, please contact the Northern Ireland Rare Disease Partnership on info@nirdp.org.uk.

Please note that you do not need to answer every question. Complete survey data is most useful, but we understand that you may not wish to disclose, or have time to provide, all information.

This survey is available in a variety of formats (large print, hard copy, verbal delivery and different colour contrasts). Please contact raredisease@qub.ac.uk as above if you would like an alternative format.

Thank you for your participation.

By completing this survey, I am confirming that I am over 18 years of age, I understand the purpose of the study and give my consent for my responses to be used anonymously for research. *

 

Date completed:

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