Earlier this year a project was launched by RareBestPractice/EURORDIS to gather a panel of experts with the aim of producing a new guideline which would contain expert recommendations for the diagnosis and treatment of Catastrophic Antiphospholipid Syndrome (CAPS). From these guidelines, there was also a follow-up project in development to adapt these clinical guidelines for patients and their families, to give everyone access to as much information as possible about this rare APS variant.
I have recently been given the disappointing news that due to delays to the project, EURORDIS has decided to not continue with the development of an endorsed patient guideline for the diagnosis and treatment of CAPS. This is because the pilot project was given a deadline of December 2016, and due to delays with the clinical guideline, it has not been possible to complete the patient guideline in this time. They will still complete a final version of the clinical guideline, so the project was not entirely in vain!
I have been advised to bring the work and information from this project back under the umbrella of existing APS organisations/groups, as I have the clinical guidelines and access to the relevant clinical experts.
What I'm suggesting:
What I would like now, as part of a wider process, is to gather as many patients as I can who have either experienced CAPS themselves, or are a family member/carer of someone who has had CAPS, and get your thoughts and feedback on the information available so far. Hopefully further down the line we can get still get a final version of these guidelines into circulation - it would be a real shame for this work to go to waste and this guideline not see the light of day because of someone else's missed deadline!
If you would like to be involved in this, please do drop me a message here, or we can chat over Skype or similar if that is easier.