Vasculitis UK News

New Rare Rheumatic Disease National Register

10 Mar 2019

Help create a national register for people with rare rheumatic diseases

A key commitment of the UK’s Strategy for Rare Diseases is to create national registries. Better data will help us to find out how many people have each rare disease, how they are diagnosed, and how and where they are treated. This will give better information to people living with rare diseases, their doctors, and the commissioners of health services. It will mean that more people with rare diseases can be involved in research, and this will result in the development of new and better treatments. The aim of this research is to improve health for people with rare diseases.

Dr Fiona Pearce, Clinical Lecturer at the University of Nottingham, is working with the National Congenital Anomaly and Rare Disease Registration Service, which is part of Public Health England. They are starting to collect data on rare diseases. Fiona's work means that they can prioritise rare rheumatic diseases (such as Lupus, Vasculitis, Myositis, Sjögren’s syndrome, Scleroderma and Behçet’s disease).

The current research is looking at the best ways to find and register people with rare diseases. Can you help find a way to do this effectively and efficiently?

If you would like to give your views, and help shape or champion research on the best ways to do this please contact Dr Fiona Pearce: fiona.pearce@nottingham.ac.uk

More information on the data collected by the NCARDRS, how it is used and your right to opt out of the register if you wish is available here.

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