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Societal Cost of MS

Introduction

‘The Societal Cost of Multiple Sclerosis in Ireland’ was initially researched by Dr. Killian O’ Rourke and Dr. Chris McGuigan, in association with MS Ireland and with support from Novartis Ireland in 2015. As much has changed in recent years, MS Ireland and Novartis Ireland are looking to gain an insight into the current ‘Societal Cost of MS in Ireland’ to identify and compare any differences in the lives of people with MS in Ireland.
 
If you agree to participate in this questionnaire, you will be asked some questions that require reflection on your condition and its impact on your quality of life. If you think you may find this distressing, or if you experience any emotional distress during the survey, please be aware that your participation is completely voluntary and that you are free to skip a question or exit completely without consequence to you.


What is this research about?

This study aims to measure the economic impact of Multiple Sclerosis (MS) in Ireland, and in particular an MS relapse, on the patient, their carer, and society.
 

Why are we doing this research?

Multiple Sclerosis is a chronic progressive neurological condition that can significantly affect a person’s health, lifestyle and relationships. Thus it is associated with a significant personal and societal burden which, according to previous international research, is associated with substantial costs.
 
What are the benefits of participating in this research?

By providing such evidence you will not only be filling a large gap in the literature, you will be improving the public awareness of MS. Ultimately, the hope is that the findings of this research that you have participated in, will inform future health policy in Ireland 


What will happen if I decide to take part in this research study?

If you decided to participate in this research, you will be asked to complete a voluntary questionnaire that will take up to 15 to 20 minutes to complete.
 

 You can skip any questions you are uncomfortable answering, or exit the online questionnaire at any stage and return to the study if you wish. Alternatively the participants can discontinue and withdraw from the questionnaire at any stage. Only data from those who reach the end of the survey and submit their responses will be used.


 
What are the risks of participating in this study?

There is a risk that you may experience some emotional distress as you will be asked some questions that require reflection on your condition and its impact on your quality of life. Participation is voluntary and your information is provided anonymously. All necessary steps will be taken to ensure your privacy.



How will my privacy be protected?

As an anonymous survey, you will not be asked to input any personal data such as  your name, PPSN, address, nationality or date of birth nor will you be required to report any specific details of your regional location, GP provider, consultant, or name any specific medication you may be taking. However, please note, that if you decide to report an Adverse Event Novartis will the data detailed below, such as your name, doctor’s name and relevant contact details. Any data processed for this purpose will be  processed in accordance with Novartis’ Privacy Notice for Individuals Who Are Involved in Adverse Events, Medical Information Queries or Complaints.  


What will we do with the results?

The previous results of this research has been published and is available for you to review on MS Ireland’s website. A report with the results of our analysis and evaluations will be published by MS Ireland and will, thereby, help to inform public awareness, discourse, and policy affecting people with MS in Ireland.
 

Subsequent to this, the findings will be sent for academic publication and presentation at academic conferences. MS Ireland and Novartis Ireland are the joint data owner.

Will I be informed of the results of this research?

MS Ireland will communicate to its members via its mailing list and social media the key findings of the MS Ireland report that will come from this study, and will also provide access to the final report in electronic and print format to those wishing to read it in full.
 
An academic publication is also expected to validate and record the study in the relevant literature. This paper will also be available to interested parties by request.