There are presently over 2,000 New Zealanders affected by epilepsy participating in our research.
Our research includes people with any form of epilepsy, including generalised and focal epilepsy syndromes, epileptic encephalopathies, other severe epilepsies in infancy and childhood, malformations of cortical development, and febrile seizures.
Those with a known genetic mutation are also invited to participate in our research. We are particularly interested in the epileptic encephalopathies as well as families where 4 or more people have epilepsy. However, a family history of epilepsy is not necessary to be eligible to participate. It is important for validation of epilepsy genetic discoveries for us to have individuals with and without family histories of epilepsy in our project.
Those who take part in the study give informed consent, are interviewed using a validated seizure interview, their clinical records are reviewed thoroughly, and their DNA is extracted from blood or saliva. Where possible, we also study the parents of people with epilepsy regardless of whether or not they have seizures. Other family members may also take part in the study.
Participating in the research is a positive step that people with epilepsy and their families can take to help improve outcomes for others affected by epilepsy.
Patients participating in our research may receive research genetic testing that is not readily available clinically in New Zealand. If through the research project we identify a gene which we think is likely the cause of the families epilepsy we will tell them if they want to know. Genetic diagnoses obtained through our research study has been valuable to families.
A genetic diagnosis has helped direct therapy, connect families to other families with similar genetic causes, and provide closure to individuals and families as they develop a better understanding of why they have epilepsy.
Referring your patient
Ask if the family if they would like to be contacted to talk about participating in the study. As the clinician, you can either:
- Download our research referral form (PDF format, 78.8K) and return it to us via email or post
- Email: epilepsy.research@otago.ac.nz their name (and parents' names, if appropriate) and contact information along with any information regarding their epilepsy, their family history of epilepsy, and any other relevant information
A research assistant will then contact the family to discuss the research in more detail and to answer any questions they may have. The family can then decide whether or not they wish to partake.
You can download our information sheet and consent form ( PDF format, 979K) to review.