MND Register Version 3.0
Research type
Research Database
IRAS ID
194611
Contact name
Siddharthan Chandran
Contact email
Research summary
The Scottish Motor Neurone Disease Register
REC name
Scotland A: Adults with Incapacity only
REC reference
15/SS/0216
Date of REC Opinion
15 Jan 2016
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Demographics of all persons diagnosed with adult-form MND in Scotland, their diagnosis data, progression of disease data and death data will be obtained from two sources - the person themselves and their medical records held by the NHS. Data will be forms completed by the patient or data will be collected by research nurses visiting NHS hospitals and directly inputting data on to the secure database via web access from an NHS computer.
Research programme
Our research programme has 3 goals: 1. Monitor incidence of MND in Scotland 2. Evaluate prognostic modelling though longitudenal epidemiology 3. Audit care at diagnosis and intervention timing to compare it with international and national standards. All of this activity and the existence of the MND Register is strongly supported by the MND community and the funding remains secure.
Research database title
The Scottish Motor Neurone Disease Register
Establishment organisation
University of Edinburgh
Establishment organisation address
Institute of Genetics and Molecular Medicine
Western General Hospital
Edinburgh
EH4 2XU