The UK scleroderma study group (UKSSG) is a working group comprising of key centres that have a clinical and research interest in scleroderma and that have been working collaboratively to advance research and clinical practice for scleroderma patients over the past 25 years. The group was established by Professor Dame Carol Black on the principle of inclusive participation. Thus any clinician with an interest in scleroderma and a wish to be involved in the research activities of the group is invited to join. Download the 2017 UKSSG members list.
The group meets formally for a business meeting twice each year, with one of these meetings generally being in London. A key role for the group is to foster collaborative research and a series of recent studies in UK have used the UKSSG infrastructure to facilitate collaboration.
A key recent initiative has been the development of 'consensus best practice' recommendations for the management (investigation and treatment) of major complications of systemic sclerosis and the documents produced by working groups in each area are available for download below.
The UKSSG has close links with other relevant national and international groups including UK patient support organisations, the Scleroderma Special Interest Group of the British Society for Rheumatology, European Scleroderma Trials and Research Group and the Scleroderma Clinical Trials Consortium.
If you are interested in learning more about the UKSSG activities or would like to apply to join the group, please contact Millie Williams on email@example.com.
Consensus best practice documents
- Consensus best practice recommendations for scleroderma
- Cardiac flowchart
- Cardiac glossary
- Digital vasculopathy flowchart
- Digital vasculopathy glossary text and references
- GI manifestations flowcharts
- GI manifestations glossary
- Lung fibrosis flowchart
- Lung fibrosis glossary
- PAH flowchart 1
- PAH flowchart 2
- PAH glossary
- Renal crisis management
- Renal crisis glossary
- Renal crisis monitoring and screening flowchart
- Renal crisis presentation flow chart
Our new electronic patient record (EPR) is live. Patients at the Royal Free London will benefit from the new system… twitter.com/i/web/status/1…
“EPR means that our staff can always access the information they need, when and where they need it, so our patients… twitter.com/i/web/status/1…
Three-way kidney sharing scheme leads to a bright future: When Martha Myers learnt that her husband needed another… twitter.com/i/web/status/1…
Sarah, one of our midwives at the Royal Free Hospital, is using our new electronic patient record system to deliver… twitter.com/i/web/status/1…