National Brain Aneurysm and Vascular Malformations Patient Registry – Progress

24th August 2017 (Dr. Niall Pender):

The projects are all progressing very well. We have appointed two Research Assistants to work on the various elements of the project. The first is developing the register which, while it is in its infancy, is progressing well and we are getting a lot of help from the ALS register team in Trinity College Dublin.

The second part of the project involves the development of clinical and research neuropsychology services for neuro-vascular patients in Beaumont Hospital. We’ve appointed a Research/Clinical Assistant Psychologist 2 days per week and she has started seeing patients that are 3 months surgery. She has seen a total of 20 patients for full neuropsychology assessments and is seeing a steady stream each week (a detailed cognitive work-up takes about 1.5-2 hours per patients). We will also be including the un-ruptured aneurysm group now that we have the systems and protocols in place. We are getting a very positive response from patients who are keen to avail of the service and very interested in receiving feedback on their performance.

We also have one of our post-docs who is completing his clinical psychology training in UCD and he has come on board to do his clinical thesis on this group. He will assess a retrospective and prospective cohort of angio-negative SAH patients, as these patients subjectively report cognitive difficulties but no major study has examined them in detail.

These work-packages are progressing well and we hope to start dissemination of the preliminary results shortly. We have a poster accepted at the Psychological Society of Ireland’s annual conference in November, are preparing a systematic review on the cognitive features of angio negative group which should be ready in the next month or so and will be preparing the angio negative patient data once we have about 40 patients (>20 patients have so far agreed to participate). We will, of course, acknowledge Friends of A on all presentations/publications.

The next stage is to build the clinical services for the surgical and non-surgical groups, develop educational/training materials and possibly a series of short cognitive rehabilitation groups for these patients.

We would like to thank Friends of A for their support as we would not have been able to develop any of these services and programmes without their kind assistance.

Best wishes,
Niall Pender & Mohsen Javadpour