CAPS patient working group: Hi everyone... - Hughes Syndrome -...

Hughes Syndrome - APS Support
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CAPS patient working group


Hi everyone,

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.

5 Replies

Thank you for posting the update, I will copy this and post it over to Professor Graham Hughes at London Bridge for you! MaryF

in reply to MaryF

Thanks Mary, that'd be really helpful!


I'm interesting in helping with this. I am a CAPS survivor from 2013. Resulted in cerebellar haemorrhage, primary adrenal insufficiency (Addison's disease) kidney damage, thrombocytopenia....

I had numerous treatment therapies I believe. I'm waiting for a report on it oddly which may prove helpful, as I am interested myself?


Hi Danny,

Your input would definitely be really helpful, thanks for volunteering to help. It probably won't be until the end of the year that the clinical guidelines are finished so I'll wait a bit longer to see if anyone else also wants to contribute as well, but will certainly get back in touch soon once there's a better idea of how much work needs to be done.


Hi Lisa -First Thank You for all your work on this . i would like to help and to be informed when more info becomes available - i have a fatty liver problem { supposidly ] and found out what i wa told was not accurate . Pm me some time when you get a chance . Maybe this would be helpful in itself


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