|Overview of Research Registries|
Rare, but not rare enough
Difficult and deadly
"To do no harm…"
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You may join all of the research registries and quality of life studies that you are eligible for. It's not like clinical trials, where you are limited to just one.
Thankfully, Systemic Sclerosis is a rare disease, with possibly one person in 8,000 affected in the UK. At the Royal Free Hospital, in London, we see nearly one thousand patients, and over several hospital departments and external centres, our research covers many aspects of the disease, from genetic expression studies and biochemistry to epidemiology and clinical approaches to management of the disease.
Systemic Sclerosis is an extremely difficult disease to research well, particularly with regard to assessing the benefits of new treatments. The various organs that can be involved mean that only a very few patients form a near homogeneous subset with closely matching disease characteristics. A small sample has no statistical power and makes prediction of the course of the disease very difficult. Also, some of the worst complications of disease, like malignant pulmonary hypertension or ischaemic bowel involvement, can rapidly prove fatal once established, so efforts to prevent this progression must be taken with conventional accepted treatments.
It is therefore often ethically impossible to run placebo based trials for these dangerous complications. Trials often have to be run with one group receiving their current "traditional" medication and the other group getting the "experimental" treatment. This can make the trials impossible to "blind", and thus may expose the experiment to sources of unconscious bias which are capable of ruining the chances of a good fair result. In some cases in other diseases in the past, this approach has presented real dangers, where a drug would actually be harming the patients, compared with not having any treatment at all.
In an effort to increase the numbers of UK patients available for research and to manage multi-centre drug trials, The UK Scleroderma Group has set up a Central Register of UK Systemic Sclerosis patients. Consultant physicians, surgeons and general practitioners are being encouraged to register their cases of Systemic Sclerosis. Great care has been taken to exclude the elements of confidential information from the registry data, and the individual doctor registering their patients identifies their cases by a unique code, rather than the patient name or even hospital number appearing on the register.
The registration form (by post, fax or e-mail) is brief and takes less than one minute to complete, with a small amount of demographic data (sex of patient, date of birth), and check boxes to indicate the organs involved (Skin, Raynaud's, Pulmonary Fibrosis, Pulmonary Hypertension, Renal, Upper G. I. Tract, Lower G. I. Tract, Heart, Large Vessels) and to indicate the subset of disease (limited cutaneous involvement where only the skin of hands, feet and or face is affected, or diffuse cutaneous involvement where the skin on the trunk and upper parts of limbs may be affected), and onset dates for skin involvement and Raynaud's phenomenon. For consultants with more than just a few patients, a computer database application has been developed to allow the consultant to manage their own register to merge with the central register at suitable intervals.
This minimal set of data should enable us to identify patients who may be candidates for some research project or trial being set up by other researchers in the UK group and should enable patients to take part in their own local hospitals rather than travelling to distant centres. The register is intended to act as a clearing house to allow contact between the researcher and the patient's main healthcare provider, who will assess the suitability of their candidates who fit the research criteria.
UK patients should please get in touch with us and we will contact their consultant. Researchers and Pharmaceutical organizations with projects and trials under consideration are also welcome to contact us.
Further details can be obtained from us by contacting us at:
Centre for Rheumatology
Royal Free Hospital and University College Medical School
Royal Free Hospital Campus, London
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.