What is Antiphospholipid syndrome (APS)?
Antiphospholipid syndrome is an autoimmune condition in which the blood clots more quickly in veins and arteries. With an autoimmune disease, the body creates an inflammatory response aimed at its own cells and tissues although there is no indication of a virus or bacterial infection. In APS, inflammatory proteins, so called antiphospholipid antibodies, are produced to fight the body’s own proteins that in turn attach themselves to fat molecules (phospholipids). These attachments lead to inflammation and blood clotting, and these blood clots in the veins (thrombosis or pulmonary embolism) and in the arteries can result in a stroke or heart attack for example. There are also a number of other symptoms of APS which may cause neurological problems, kidney infection or skin infections.
It is not known how many people suffer from APS in the Netherlands. Estimates suggest that between 1000 and 2000 people have been diagnosed with the condition. It occurs more frequently in women than in men.
ARCH antiphospholipid syndrome working group
The ARCH antiphospholipid syndrome working group aims to create a consensus on the treatment of APS, and determines and implements improvement where necessary. In addition, the working group gathers information about the current care being offered and who the relevant experts are
Working group members
The working group’s project leader is Dr Maarten Limper, internist-clinical immunologist at the University Medical Center Utrecht. Maarten is supported by Tammo Brunekeef, PhD student and project manager. The other members of the working group are:
- Dr Titia Lely – gynaecologist, UMC Utrecht
- Dr Marc Bijl – rheumatologist, Martini Hospital Groningen
- Dr Rolf Urbanus – clinical chemist, UMC Utrecht
- Sander Otter – patient representative
- Anke Coenen – patient representative
- Dr Karina de Leeuw – internist-clinical immunologist, UMC Groningen
- Dr Nyika Kruyt – neurologist, LUMC Leiden
- Dr Gerard Jansen – haematologist, Erasmus MC Rotterdam
- Dr Marcel van de Ree – internist, vascular medicine, Diakonessenhuis Utrecht
- Julia Spierings – Rheumatologist UMC Utrecht
As a result of the second consensus meeting, the consensus document is now being completed describing the diagnosis and treatment of APS. The document should be ready for publication in early 2019.
In addition, the survey into the care currently provided for APS is underway (involving focus groups, patient questionnaires and interviews with practitioners). The working group will complete the survey in the coming month and continue with their study into the status of APS in various hospitals.