Study area

Scleroderma

Scleroderma is uncommon and varies from person to person, so each study tends to look at one part of it: the skin, the fingers, the lungs or the gut.

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About Scleroderma

Systemic sclerosis is an autoimmune condition in which the body makes too much collagen. The skin thickens and tightens, often first on the fingers and face. Most people have Raynaud's, where fingers turn white or blue in the cold, and some get painful sores on the fingertips. It can also affect the lungs, the digestive tract, the kidneys and the heart.

Research tests medicines that calm the immune system or slow the build-up of scar tissue, treatments for Raynaud's and finger sores, and approaches for lung involvement. A few studies look at intensive treatments, such as stem cell transplant, for people with fast-moving disease.

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Research in this area

Kinds of study you will come across

Most studies in this area fall into one of these groups. A listing usually says which one in its first lines.

Skin thickening

Test whether a medicine softens the skin, measured by a doctor pinching set areas.

Raynaud's and finger sores

Look at medicines that improve blood flow to the fingers or help sores heal.

Lung involvement

Study treatment for scarring of the lungs that comes with scleroderma.

Gut and nutrition

Research on reflux, swallowing, bloating and keeping weight on.

Be ready

Before your first call

What studies in this area often involve, and what a study team is likely to ask you for.

What visits tend to involve

A skin score, where a doctor checks the thickness of the skin in set places
Breathing tests and, for some studies, a heart scan
Blood tests, including the antibodies linked to scleroderma
Photographs of the fingers if the study is about sores
Questionnaires about hand function, pain and fatigue

Have these to hand

When your first symptom that was not Raynaud's began
Which antibody your blood test showed, if you know
Your recent breathing test or heart scan results
The medicines you take, including any that dampen the immune system

Your questions

Questions to ask the study team

Write them down before you call. A good team expects them, and the answers help you decide.

Which part of scleroderma is this study looking at?
Do I need to stop any of my current medicines first?
What happens if my skin or lungs get worse during the study?
Can visits be planned for warmer times of day if the cold sets off my Raynaud's?