Step by step
Discussions with patients and healthcare professionals in the Netherlands and abroad have shown that expertise on rare forms of arthritis is fragmented. More collaboration and the exchange of knowledge, experience and information between attending specialists and experts significantly improves patient care and their options for treatment. ARCH makes access to expert knowledge and experience possible.
As we could not possibly deal with all the rare forms of arthritis at the same time, working groups were established in 2017 and 2018 on systemic sclerosis (SSc), ANCA associated vasculitis (AAV) and Antiphospholipid syndrome (APS) and later on systemic lupus erythematosus (SLE). Studies show that that we can do the most for the patient in the short term for these particular conditions. Other rare forms of arthritis may follow in due course.
More roads lead to ARCH
No systemic autoimmune disease is the same and the experience and knowledge we have of each condition is different too. For each systemic autoimmune disease, we need to take a different path so as to get to the quickest diagnosis and the best treatment and care. For one condition, the focus may be for ARCH to facilitate better collaboration (AAV) or exchange of data (SSc), while for another condition we may start by making current knowledge and experience more accessible (APS).
For each systemic autoimmune disease covered by ARCH we aim at least to:
- Establish with patients what the ideal result is per condition and how we can measure this
- Develop insight into the current situation through practical studies that establish where improvements need to be made
- Create consensus on the diagnostics and treatment of the condition in question
- Provide access to expertise through regional networks called the ARCH hubs
- Save information clearly and consistently in the cloud so that information is up to date and better research can be carried out
- Enable information to be shared between patients and their attending practitioners in different hospitals with an aim to share care and decision making
- Make our network visible for patients and others requiring our expertise
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