Share Your Voice: Rare Disease Family Cost Diaries: Economic Impact

This project forms part of a wider research study examining the social and economic impacts of living with a rare disease on families of children with rare diseases across Ireland and Northern Ireland. The research is being conducted as part of a PhD project by researchers at University College Dublin.

The study involves a cost diary component, which aims to record the expenses families incur in relation to their child’s rare disease.

Participants will be asked to complete a short weekly cost diary over a three-month period. The diary will capture costs associated with the child’s rare disease, including GP visits, medications, special dietary foods, assistive devices, home adaptations, travel expenses, parking fees for healthcare appointments, paid assistance, and any impact on work hours. Participants will record each expense and the associated cost. The diary can be completed on a computer, tablet, or phone throughout each week.

At the end of each month, participants will be asked to submit their completed diary pages via a secure file-sharing service. Full instructions will be provided with the diary templates.

Individuals who are interested in participating or would like to learn more about the study are invited to provide their email address. Email addresses will be removed from survey responses to ensure anonymity and will be used solely to provide information about taking part in the cost diary study.

For further information, the PhD researcher, Niamh Buckle, can be contacted at niamh.buckle@ucdconnect.ie. The Principal Investigator, Dr Suja Somanadhan, can be contacted at suja.somanadhan@ucd.ie.

Click this link to share Your Voice. Rare Disease Family Cost Diaries: Economic Impact