The Irish National Foundation for Epilepsy Research
Background
The Epilepsy Programme at Beaumont Hospital is the Main tertiary referral centre for patients with epilepsy and related disorders in Ireland. We integrate clinical care and research through the work of a multidisciplinary team of healthcare professionals including clinical neurologists, neurosurgeons, nurses, neurophysiologists, technical personnel, psychologists, neuropathologists and physical scientists. Our aim is to advance the understanding of the underlying causes of epilepsy and continuously improve our care of patients and their carers.
Ongoing outpatient care is currently provided at two weekly clinics where 50-70 patients are seen. The second clinic is small and dedicated to patients with special needs. The in-patient ward service includes beds for patients with acute seizures or new onset attacks (4-6). A video monitoring unit with two beds is located on the neurology ward where we can bring on attacks under controlled conditions to try and document where in the brain the seizures are coming from. This is essential if the person is suitable for surgery. This is the only dedicated unit in the country for pre-surgical evaluation (about 5000 patients would be eligible for surgery of one form or another- the waiting list for this monitoring service is up to eighteen months and only about 90 patients are served on a yearly basis). The clinical nurse specialists in epilepsy run a telephone help-line for patients to call at any time for advice on treatment and related care and the pregnancy help-line is available for patients who become pregnant while on potentially toxic medications.
Whilst we are proud of our achievements in the provision of services to people with epilepsy we strongly feel that the urgent needs of sufferers of epilepsy are not being met. We feel that epilepsy, given its prevalence, has never received its due recognition and remains one of the most under-funded, under-resourced and fundamentally neglected areas of the health service in Ireland.
The Research Projects
Electronic Patient Record
Funding has recently been awarded from the Health Research Board (230,000) to design and implement an electronic tracking system that will eventually do away with the paper record. It will form the basis of a research and clinical database from which information can be collated and matched. It will form the basis of the first true epilepsy register in Europe to really define the extent of the problem in a modern European context.
Pregnancy Register
The Epilepsy and Pregnancy Register at Beaumont Hospital was set up to follow the health of patients during their pregnancies, the effects if any of anti-convulsant medication on their unborn children and the developmental risks, if any, to such children. There are currently 450 patients on the register and the study is ongoing.
Imaging
The field of epilepsy has benefited hugely by the ability to visualise the structures in the brain that are thought not only to be the potential generators of seizures but also those that are damaged by poorly controlled seizures. Our research, which includes collaborations with international imaging centres at Harvard Medical School and the University Of Liverpool Medical School, is particularly concerned with quantifying the multiple levels of information that the brain displays such as volume, shape, surface area, folding pattern, cortical thickness and wiring patterns. The MRI of each brain is recreated in a three dimensional virtual space and analysed meticulously on powerful computers to see if any of the morphometric characteristics are abnormal giving clues to the disease, its treatment and prognosis.
Genetics of Epilepsy
Our ‘genetics in epilepsy’ research programme aims to contribute the understanding of the complex interaction of the genetic information that results in epilepsy, and on inter-individual genetic differences that may be important in determining response to treatment and risk of serious side effects of therapy.
Nursing Based Research
There are currently four specialist nurses in the department all doing postgraduate courses in epilepsy care involving research projects spanning auditing the weekly epilepsy clinic, looking at the incidence of osteoporosis in epilepsy patients and investigating the effect of nursing intervention of a learning disabled group of patients with epilepsy. We cannot emphasise enough the importance of this group to fulfilling the goals of our clinical and research mission.
Projects Currently Requiring Funding:
Epilepsy Pharmacogenomics Project Research Nurse
Funding is required for research nurse for ongoing epilepsy pharmacogenomics project to manage database and blood collection. The management of this database is labour intensive but critical.
Pharmacogenomics relates to the study of natural genetic variation between individuals and may determine why some patients are treatment-responsive and why others are treatment-resistant, why some patients respond to some drugs and not to others, and why some patients get particular side effects of therapy and others do not.
This position requires funding for three years at a cost of €50,000 euros per annum.
Short to Intermediate Residential Care Multidisciplinary Holistic Facility for Individuals with Complex Epilepsy
We are currently seeking funds for this longer term project. In order to help the planning of this enormous project we would respectfully ask for tax effective donation to be made over a three year project. We anticipate at this stage that funds required by INFER will be in the region of €5,000,000.
A leaflet providing further details on INFER activities is avaible for download (part 1, part 2).
