Journal of IiME Volume 7 Issue 1 An important aspect of the biomedical research is that properly defined and distinct patient cohorts are defined and maintained. The research would be oriented toward translational biomedical research, which allows results from research to be applied toward treatments for ME patients. Our initial proposal for research which has been discussed with researchers at the UEA, would aim to initiate studies using TGAC sequencing facility at the Norwich Research Park which would allow all known and unknown viruses present to be identified in a cohort of well defined patients. Allied to this would be biomedical research projects – the first of which would examine the possible link between ME and gut inflammation. A Research Database These initial and ongoing projects would enable a database to be established for use in further research. This research database will assist epidemiological studies, enhance research potential and provide patients with proper records of treatment. A research protocol will be established to outline all the study procedures, including data collection and planned data analysis. THE CURRENT INFRASTRUCTURE This proposal would make use of the existing infrastructure where patients are initially seen by GPs and referred to a consultant. Where it differs is that a specialist biomedical clinical lead would be used to perform diagnosis and provide treatment and would be working with a translational biomedical research facility at the university in order to deliver real improvement in patient care from scientific discovery THE BENEFITS The above proposal would lead to a facility with the following benefits – Early and correct diagnosis of ME (May 2013) the clinical lead consultant would assess and plan the development of future services in conjunction with commissioning CCGs it would provide access to specialist assessment, diagnosis and advice on the clinical management, including symptom control and specific interventions, for both patients and health professionals eventual provision of an ambulatory service and/or telemedical services for those severely ill patients who cannot be moved development of a network of local multi-agency domiciliary services to support people who are more severely affected and who are unable to access hospital and primary care services allow ME patients (including those severely affected) to participate in clinical trials, where novel research will be conducted, and where medical students can learn about this disease facilitate training and education opportunities for healthcare staff to enhance their knowledge and skills in the diagnosis and management of ME lead the development of services within primary and secondary care and support GPs and other health professionals in the care of patients with ME. Healthcare staff would feel more comfortable with the diagnosis of ME being made Undertake comprehensive assessments and provide a care package for each patient to include carer and family support Savings on existing consultant referrals and staff by concentrating ME examination in one area. The benefits of this approach will, we are sure, save lives and could help restore or improve the lives of hundreds of thousands of patients and their families. TRAINING of HEALTHCARE STAFF The need for training in ME is one of the main areas of interest for the ISG. The proposed model would allow the GP network to have access to up to date information about ME including data on treatments and prognosis. Specialist advice for more complex cases across the country could be provided based on referrals from Invest in ME (Charity Nr. 1114035) www.investinme.org Page 12 of 36
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