Hi everyone,
I am sharing this information with you all on behalf of the Rare Auotimmune Rheumatic Diseases Alliance (RAIRDA) - rairda.org/
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 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. The work she is doing means that they can prioritise rare rheumatic diseases (such as lupus, vasculitis, myositis, Sjögren’s syndrome, scleroderma and Behҫet’s disease). We need to do research on the best ways to find and register people with rare diseases. Can you help us 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:
fiona.pearce@nottingham.ac.uk, Dr Fiona Pearce, Clinical Lecturer, University of Nottingham
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 at gov.uk/guidance/the-nationa....