ADONeSS - Study of Autoimmune Diseases of the Nervous System

Purpose of Study 1. Describe the epidemiology and natural history of ADONeS 2. Characterisation of features and symptoms. 3. Identification of risk factors predisposing to these disorders. 4. Analyse clinical, immunological, radiological bio-chemical and genetic factors. 5. Identify factors affecting health-related quality of life (HRQoL). 6. Identify and describe the costs of illness and determine factors associated with these costs. 7. To compare data with healthy controls (such as the relatives/spouse/partner or friends of people with ADONeS) 8. If required, share the tissue samples and clinical information as pseudonymised data in collaborative research with groups outside Liverpool, including international researchers (e.g. Europe, America) who are studying similar diseases. This void in rare disorders has now been recognised and there are now European and UK Government initiatives to improve research and care in Rare Diseases. This application is in keeping with that vision. * ADONeS aims to conduct systematic research on clinical, immunological, radiological bio-chemical and genetic aspects of patients with ADONeS. * There are two arms to the study: * Retrospective review of the medical records of patients with ADONeS seen at the WCFT * Prospective recruitment of patients who attend the WCFT Example of Successful Research The investigators would like to cite a relevant example of our work so far. The investigatos have been conducting a study on a rare disorder Neuromyelitis optica (NMO) from 2003 (MREC 02/8/082 from 2003). NMO is a severe inflammatory disease of brain and spinal cord with severe attacks causing blindness paralysis and death within few years of onset. Very little was known about the disease when the Walton centre started the study in 2003. Over the last 13 years the investigators have systematically collected data on \>200 patients that have led to \>20 publications that have helped immensely the management of this disease worldwide. The investigators have reduced relapse rate and prolonged survival and have been designated a national center of excellence for NMO in UK (one of two centres funded by NHS England) and currently run the first multidisciplinary service for NMO in the world. The investigators have facilitated 3 international clinical trials and have done one at the Walton centre itself.