What is Systemic sclerosis?
Systemic sclerosis, or scleroderma is a rheumatic disease characterised by a combination of malformation of the blood vessels, inflammation and tightening of the connective tissue in the body. The word ‘scleroderma’ comes from the Greek words ‘sclero’ meaning hard, and ‘derma’ meaning skin. Scleroderma literally means ‘hard skin’. Connective tissue is found throughout the body and can become hardened anywhere, even muscles, joints and organs may be affected. This is why it’s called systemic sclerosis.

Figures
Approximately 3000 people in the Netherlands have systemic sclerosis (the exact number is unknown). Each year, there are some 100 diagnoses of systemic sclerosis and it occurs three times more often in women than in men. The disease usually develops sometime between the ages of thirty and fifty. Scleroderma is roughly divided into two major classifications, depending on the extent to which it affects the skin: diffuse cutaneous systemic sclerosis and limited cutaneous systemic sclerosis.
(source ReumaNederland)

More information on systemic sclerosis can be found on the ReumaNederland website (Dutch only) and the NVLE website (limited information available in English).

ARCH Systemic Sclerosis working group
The ARCH Systemic Sclerosis working group gathers information about the current care being offered for systemic sclerosis and who the relevant experts are. They also determine and implement improvements where necessary. In addition, the working group will develop, carry out and evaluate a pilot in which the first patients with systemic sclerosis will be treated through the ARCH platform.

Working group members
The workgroup’s project leader is Dr Madelon Vonk, rheumatologist at Radboudumc Nijmegen. The other members of the working group are:

  • Dr Jeska de Vries-Bouwstra – Rheumatologist, LUMC Leiden
  • Dr Els van den Ende – Senior researcher, Radboudumc
  • Julia Spierings – Rheumatologist, UMC Utrecht
  • Lian de Pundert – Physiotherapist, Haga Hospital
  • Rita Schriemer – NVLE representative

Various other healthcare professionals also contribute to the project “The path to high quality, accessible care for people with systemic sclerosis.” If you would like to know who is involved, click here.

SSc pilot

The ARCH pilot project was launched at the beginning of 2019 for patients with a probable diagnosis or with a confirmed diagnosis of systemic sclerosis.

Questions for the working group?