Current Clinical Studies

Participating in FutureNeuro studies and registries

Future Neuro has a large number of ongoing pre-clinical and clinical research studies. This page provides details on current clinical studies and patient registries open for participation.

We also study high volume patient data from hospital-based electronic records.  These studies are ongoing but are not open for participation as they are retrospective studies of large datasets.  For more information on how we use patient data for research purposes please see How We Use Patient Data.

Currently, we are establishing registries for people with epilepsy and seizure disorders. Participants in our registries receive top-tier data management, governance, and clinical expertise. We uphold the highest ethical, legal, scientific, and clinical standards to ensure the integrity of their data.

It is important to note that we may be approached by companies seeking to engage with patients for clinical trials or epidemiological assessments. However, we prioritise patient privacy and data protection. Patient data will never be shared with third parties without explicit permission or consent obtained during the registration process. We always clarify the rules and guidelines of each registry at the outset.

How to get involved

Patient registries are a way for people to share their experiences, this data helps build stronger research. Patients are recruited to our registries by consultants and their teams at hospitals around Ireland.  If you or someone you know has an interest please contact your doctor or hospital clinical team.

Current Patient Registers

Eager Register

Development and Establishment of a Register of Patients with Epilepsy caused by Genetic Mutations – The Epilepsy Associated Gene Ready Register (EAGER). The aim is to set up an Irish register of patients with epilepsy due to known genetic mutations. 

• Information Leaflet
• Consent Form
• Ethics Approval
• Data Protection Impact Assessment
• Health Research Consent Declaration Committee approval information

ReGarDs Register: Research Use of Diagnostic Genomic Testing Data for Epilepsy

Significant volumes of genetic data are now produced in the clinical setting however this data is often not used after the initial attempt to get a genetic diagnosis. The aim of this register is for researchers to examine the data in greater detail than doctors are able to do in busy hospital settings.  The data is gathered in the hospital, gets worked on by researchers and then what they learn is sent back to the hospital to inform doctors and improve patient care.

• Information Leaflet
• Consent Form
• Ethics Approval 
• Data Protection Impact Assessment
• Health Research Consent Declaration Committee approval information

The EpiFUN study: Correlations between phenotype, genotype and functional analysis in the (neuro)genetic disorders of childhood

This study is being undertaken to help us understand more about the causes of disease in childhood, in particular genetic disorders of childhood.  We are currently running Part 1 of the study.

Part 1: CINDI Registry (confirmed genetic diagnosis) 

The aim of this study is to have a registry for children and young people with confirmed neurogenetic conditions so that they may be contacted should a suitable treatment, trial or research study become available. This study has been approved by the research ethics committee in Children’s Health Ireland. Our team will collect clinical information including genetic test results over time in a secure database. This will be stored in a coded format so the child’s name will not appear in the registry. This study proposes to bring this data into the research domain, to enable further discovery which can then help clinicians to treat and inform their patients.

If your child has a confirmed neurogenetic condition and you would like to consider being part of this study please send an email to cindireg@childrenshealthireland.ie

• Information Leaflet
• Consent Form
• EpiFUN Data Protection Office Approval CHI
• EpiFUN Research Ethics Approval CHI

Your Data Rights – find out more here.