Treating Parkinson's Survey Questionnaire

Ten-Year Comparative Analysis of Parkinson's Disease Care in Ireland (2016-2026)
Participant Information Sheet

Principal Investigator: Professor Richard Walsh, Consultant Neurologist

Study Team: Prof. Tim Lynch, Consultant Neurologist; Dr. Conor Fearon, Consultant Neurologist; Mr John Inocentes, GRN Research Nurse and Coordinator; Dr. Clodagh O’Keeffe, Research Coordinator; Ms Aoibheann Gill, Research Assistant; Ms Mairéad O’Byrne, Research Assistant

Affiliated Institution: Mater Misericordiae University Hospital

Ethics Reference: 1/378/2600TMR

Version: 2.0 |Date: May 2026

You Are Being Invited to Participate in a Research Survey

We are inviting you to take part in a national research survey about the experiences of people living with Parkinson's disease in Ireland. Before you decide whether you would like to take part, please read this information carefully. If you have any questions, please do not hesitate to contact the research team using the details provided at the end of this sheet.
Taking part is entirely voluntary. You do not have to participate if you do not wish to, and your care will not be affected in any way by your decision.

What Is This Study About?
In 2017, the most comprehensive national survey of people living with Parkinson's disease in Ireland was conducted in partnership with the Parkinson's Association of Ireland. That survey captured the experiences of 1,185 people across the full spectrum of the disease — from those newly diagnosed to those living with advanced Parkinson's — covering quality of life, symptoms, medications, and access to healthcare services.

A great deal has changed in the past decade. New treatments have become available, specialist services have expanded, and the National Deep Brain Stimulation Service has been established. We now wish, in collaboration with the Parkinson’s Association of Ireland, to repeat that survey in 2026 to understand what has improved, what challenges remain, and what the lived experience of Parkinson's disease in Ireland looks like today.

This study will:
· Re-analyse the 2017 dataset to uncover patterns and trends not previously examined
· Collect new 2026 survey data from people living with Parkinson's disease across Ireland
· Compare both datasets to measure changes in care, treatment access, and quality of life over ten years
The findings will be used to inform healthcare policy, service planning, and quality improvement for Parkinson's disease services nationally.

Survey Details
· The survey asks questions about your diagnosis, symptoms, medications, healthcare access, quality of life, and daily experiences
· It will take approximately 30–40 minutes to complete
· It is available in online (via SurveyMonkey) and paper-based formats
· You may complete it yourself, or with the help of a carer or family member

Who Can Take Part?
You are eligible to participate if you:
· Have been diagnosed with Parkinson's disease by a doctor
· Are aged 18 years or older
· Are currently resident in the Republic of Ireland
· Are able to provide informed consent
· Have sufficient English proficiency to complete the survey, or have access to someone who can assist you

You are not eligible to participate if you have been diagnosed with an atypical parkinsonian condition (such as Progressive Supranuclear Palsy, Multiple System Atrophy, or Corticobasal Degeneration) and do not consider yourself to have Parkinson's disease

Confidentiality and Data Protection
All information you provide will be kept strictly confidential and handled in accordance with the General Data Protection Regulation (GDPR) and Irish data protection law. Specifically:
· Your answers will be fully anonymised, ensuring there is no personal identifying information collected or linked to your responses
· Data will be stored securely with access restricted to the research team only
· Anonymised data will be retained for a maximum of 10 years following publication
· Only aggregated, anonymised results will be reported in publications or presentations

Voluntary Participation
Your participation in this survey is completely voluntary.
You are free to:
· Decline to participate without giving a reason
· Skip any questions you are uncomfortable answering
· Withdraw from the survey at any time without consequence
Your decision will have no impact on your healthcare or your relationship with any healthcare provider.

Potential Benefits
While there is no direct personal benefit to participating, your responses will contribute to a national evidence base that will help shape future Parkinson's disease services in Ireland. If you wish, you may request a summary of the study findings once the research is complete.

Contact Details
If you have any questions about this study or would like further information, please contact:

Professor Richard Walsh
Principal Investigator Neurology, Mater Misericordiae University Hospital - research@dni.ie
Ph: 01 803 2645

Thank you for taking the time to read this information. We are very grateful for your consideration and, if you choose to participate, for your contribution to improving Parkinson's disease care in Ireland.