Prof S Chandran and Dr R Swingler
University of Edinburgh
The Scottish MND Register is a prospective and collaborative platform for improved care, prognostic modelling, research and clinical trials.
Scotland is uniquely positioned to exploit the range of opportunities that a national MND register platform will provide. These include optimising best practice standards of care delivery, improved phenotyping to basic and clinical research culminating in clinical trial activity. We seek to re-establish a Scotland wide prospective collaborative register building on past success and recent significant Scotland wide investments in MND clinical care and research.
The Scottish MND register (SMNDR) has four explicit goals:
- We will repeat the study of incidence in Scotland, to find out if the condition is becoming more common, this will allow us to predict trends in prevalence, and model the demand for services such as non-invasive ventilation
- We will produce a new prognostic model through longitudinal assessments centred on improved phenotyping. This will lead to a well characterised cohort of patients essential for trial recruitment;
- We will develop our existing biological tissue resources such as the in-house database of four hundred DNA samples, and evaluate new biomarkers of prognosis (in collaboration)
- We will audit the diagnostic phase of care against recently established QIS standards and determine outcome after particular interventions, eg gastrostomy and non-invasive ventilation. Bringing together these developments in a national MND register will position Scotland’s MND patients uniquely to contribute to audit, research and allow maximal opportunities for participation in clinical trials.