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New survey seeking experiences of research by people living with rare diseases

Exciting news! Launch of new survey to better understand experiences of research

A survey has just been launched for people living with rare diseases in Northern Ireland to find out more about their experiences of participating in research. For people living with rare diseases, research can play a vital role in helping with the condition as well as their wider quality of life and well-being. Research can include many different activities such as participating in a patient advisory group or an exercise study.

We want to improve the way we do research and the survey is designed to help get a better understanding of both the barriers and incentives to getting involved in research. We are also interested in your views if you have tried to take part in a research study but found it difficult. Even if you haven’t taken part in research yet but you would like to in the future, we would still like to hear from you.

The survey is for both people with a rare disease and others affected – such as carers or family members.

It’s available online at The link works on mobile phones, tablets or computers.

The survey asks a number of questions about you and the disease as well as about research with different multiple choice options. There are also spaces for you to include more information.

At the end of the survey, there is also the opportunity for you to contact us ( if you would like to share your story of involvement in research. This is so that we can get more detailed understanding of experiences of research.

The survey is anonymous and no one will be able to identify you in any publications or reports.

The survey is being delivered by Queen’s University Belfast on behalf of the NI Department of Health’s Northern Ireland Rare Diseases Implementation Group. Representatives of Queen’s University Belfast and Ulster University will help with analysis of the results and report-writing.


Photo: AJ McKnight
AJ McKnight
AJ McKnight, Centre for Public Health
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Please do contact our rare disease team by email for further information.