We are delighted to announce a brand new partnership with the Beaumont Hospital National Neurosurgical Centre to establish Ireland’s first ever National Brain Aneurysm and Vascular Malformations Patient Registry. Our hope is that this will lead to a great understanding of the neuropsychological outcomes in patients undergoing interventions for brain aneurysms and vascular malformations.
What are brain aneurysms?
Brain aneurysms or subarachnoid haemorrhages are a serious and sometimes devastating condition for patients and their families. Beaumont Hospital National Neurosurgical Centre treats approximately 150 patients per year with subarachnoid haemorrhages and additionally surgeons see a large number of patients with unruptured brain aneurysms and other vascular malformations of the brain. There have been significant advances in the treatment of subarachnoid haemorrhages, but there is still a lack of knowledge in several areas such as the exact cause for formation of brain aneurysms, reasons for rupture of some aneurysms and not others, the best management option for unruptured aneurysms, and neuropsychological outcomes in patients who have a subarachnoid haemorrhage and in those undergoing treatment for unruptured brain aneurysms.
This partnership will work together to fund research of brain aneurysms through the establishment of a National Brain Aneurysm and Vascular Malformations Patient Registry.
What are the aims of the National Brain Aneurysm and Vascular Malformations Patient Registry?
Results from the development of this registry are intended to provide a better understanding of the epidemiology of subarachnoid haemorrhages and brain aneurysms, assess outcomes following treatment of unruptured brain aneurysms and vascular malformations, and allow the team to assess other risk groups, including those with conditions that result in the predisposition of developing brain aneurysms. Once established it is also expected that the data collected may provide far-reaching benefits for all those who will suffer a brain aneurysm in Ireland.
The National Brain Aneurysm and Vascular Malformations Patient Registry will aim to capture a majority of cases of brain aneurysm and vascular malformations in Ireland. This will allow accurate data to be held on all patients who are referred to the National Neurosurgical Centre and the possibility of extending to Cork University Hospital. Collection of this data will allow:
- A better understanding of the epidemiology of subarachnoid haemorrhages and brain aneurysms in Ireland.
- An assessment of the inadequacies in current service provisions for patients with brain aneurysms, and to help address these inadequacies.
- An assessment of clinical outcomes following a subarachnoid haemorrhage in Ireland. This will not only include neurological outcomes, but also neuropsychological (cognitive, mood, etc.) outcomes which often significantly affect people following a subarachnoid haemorrhage and prevent them from having a normal life.
- An assessment of outcomes following treatment of unruptured brain aneurysms and vascular malformations. This will again include neuropsychological outcomes. This is extremely important as there is a need to balance the risks from treatment against the risks of rupture of these aneurysms.
- An assessment of the incidence of familial brain aneurysms in Ireland.
- An assessment of other risk groups, such as those with autosomal dominant polycystic kidney disease, who are predisposed to developing brain aneurysms.
- Organizing future studies on the genetics of aneurysm formation and rupture.
The above goals will be accomplished by undertaking the following activities:
- The purchase, setup and development of appropriate software for the registry.
- The employment of a research assistant or assistants (full or part-time) to act as a coordinator between the relevant professionals, and collect the pre-specified data.
- The employment of any other personnel as deemed appropriate by the project partners subject to agreement in writing.
- Any other additional activities deemed appropriate by the project partners subject to agreement in writing.