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Thank you for your interest in taking part in our research.

This survey is being conducted by Ipsos B&A, an independent market research agency based in Ireland, on behalf of a pharmaceutical company in collaboration with Rare Disease Ireland, Rare Ireland, IPPOSI and Neurofibromatosis Association of Ireland.

We are conducting research about caring for people with rare diseases and would like to ask you some questions on this topic. The purpose of this research is to understand more about the experience of informal caregivers to those with rare diseases in Ireland, and your participation may lead to better health outcomes for people with your condition. The survey will take approximately 15 minutes of your time.

An informal carer is defined as someone who is not a professional carer but cares for a friend or family member without a contractual agreement, either in addition to their full-time job or having to give up their employment to care for a loved one.

With your consent, your information will only be collected and used for market research and analysis. Ipsos B&A or the sponsoring company may publish the outputs from this market research, including your anonymised responses, or use the findings for other purposes, such as (i) sharing aggregated findings with healthcare professionals or other patients, or (ii) to develop materials that may subsequently be shared. Any information you give will be treated in the strictest confidence and results will only be reported back on an aggregated basis. This data will then be compiled into a report which may be made publicly available.

As a member of EphMRA, Ipsos is bound by the EphMRA Code of Conduct and all applicable laws protecting your personal data and responses. The study is conducted in compliance with ESOMAR/ EphMRA guidelines.

You have the right to withdraw from the survey at any time. For more information about your rights please see our privacy notice, it is available at https://www.ipsos.com/en/ipsos-privacy-notice.

We are required to pass on to the sponsoring client any details of side effects or product complaints relating to their products that are mentioned during the survey. This is to help them learn more about the safety of their medicines. If this happens, we will need to collect details and report the side effects or product complaint.

You will be asked whether you consent to assist by providing additional information to the client company’s drug safety department for their follow up, but you may choose to remain anonymous. This will have no impact on the confidentiality and anonymity associated with the survey itself.


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