RAiN Research Activities
The research carried out by RAiN brings together experts from diverse fields, facilitating collaboration and knowledge sharing. This collective effort ensures a comprehensive understanding of rare diseases and paves the way for innovative solutions and improved patient outcomes.
All Ireland Rare Disease Inter-Disciplinary Research Network (RAiN) to Identify, and Understand Functional Status and Quality of Life and Family Management Measure for Children and Young People Living with Rare Diseases
Research Project: To evaluate the functional status, quality of life, and family management of children and young people living with rare diseases on the Island of Ireland and compare it with an international context.
The psycho-social impact of living with a rare disease was one of the top research priorities identified by Ireland (Somanadhan et al., 2020) and Northern Ireland (McMullan et al. 2020). However, measuring children’s outcomes in a consistent and reliable manner can be difficult, especially for children of diverse ages and health issues living with rare diseases. The impact of rare diseases on a patient’s daily activities means individuals are dependent on families or carers to manage their everyday needs (Limb et al. 2010). This project will assist to understand the significant challenges of children, young people and their families living with rare diseases on the island of Ireland and beyond.
We launched a Qualtrics web-based survey, and invited eligible participants to take part in a survey. The study was open to adults 18 years or older, who are parents of a child living with a rare disease. The survey asked questions about functional status, quality of life and family management of children and young people living with rare diseases, both on the Island of Ireland and internationally.
RAiN-CRAG
Invitation to Participate: RAiN Children’s Research Advisory Group (RAiN-CRAG)
Are you or anyone you know aged 6-17 years old and interested in getting involved in rare disease research? As part of RAiN, we want children and young people with rare diseases to guide our research so it is relevant to their needs. We want to talk to children and young people with rare diseases and get their advice on what we do and how we do it.
If you are interested in joining the RAiN-CRAG, or would like more information, please contact RAiNAllireland@ucd.ie.