If you are living with a rare form of epilepsy, or supporting a loved one with a rare epilepsy, a new national research project wants to hear from you.
The project is funded by the Health Research Board and is a collaboration between University College Dublin, Rare Diseases Europe, and our colleagues in Rare Diseases Ireland.
While epilepsy itself is not a rare condition, some forms of epilepsy are rare, or epilepsy can be a dominant characteristic of a specific rare disease or condition. This includes conditions such as Dravet Syndrome, Lennox-Gastaut Syndrome and Tuberous Sclerosis Complex. You can learn more about rare forms of epilepsy by visiting the ‘Epilepsy Syndromes & Other Conditions’ page on our website.
The project aims to design, develop and validate patient-reported experience measures (PREMs) specifically tailored to the needs of people living with rare diseases and conditions. The research team hopes to capture these experiences through an extensive survey. By sharing your experience, you can help ensure the voices of people affected by rare epilepsies are heard and reflected in future healthcare planning.
The survey will take approximately 30 minutes to complete, is anonymous and confidential, and is open to people with lived experience of rare conditions as well as their caregivers. You can complete the survey now via the UCD website using the button below:
Further information on this important research can be found by visiting the UCD website. If you have any questions about the study, you can contact Associate Professor Suja Somanadhan at suja.somanadhan@ucd.ie.
Thank you in advance for sharing your experience with this important research. You can also learn about Epilepsy Ireland’s research activities, some of which have investigated or are investigating rare conditions such as Dravet Syndrome and CDKL5 Deficiency Disorder, by visiting the ‘Research’ section of our website.
In the meantime, if you need information or support on your own or a loved one's epilepsy journey, please do not hesitate to contact your local Community Resource Officer. You can find their details by visiting the ‘Our Local Service’ page on our website.