(25/08/09)
Analysis of PSG Questionnaires
Over the past six months, the Genetic Interest Group (GIG) and Cavernoma Alliance UK have been working on a Department of Health Funded Project which will facilitate the formation of a network of professionals with expertise in the care and management of individuals affected by cavernomas.
In our effort to ensure patients, service users and carers' needs inform and guide the network's activities, we collected an account of your experiences accessing support and healthcare services for your condition.
Out of 110 questionnaires sent to the members of Cavernoma Alliance UK, we received 25% back. From these responses, GIG has produced a summary (Adobe/PDF, 53KB) which illustrates the individual and collective experiences shared.