I got contacted about a study on the impact of exercise on AS via NASS that uses myclinicaloutcomes self reporting https://www.myclinicaloutcomes.co.uk/Content/HowItWorks

It seems quite a useful way of keeping track of disease progression, though I'm not sure about how they are going to be able to analyse whether exercise really does impact on disease. The other potential use for myclinicaloutcomes is that it can feed back directly to your doctor, allowing them to also monitor your progress. Has anyone else used myclinicaloutcomes for monitoring?

One criticism I did have about the way the AS study was set up was that in the initial enrolment it gave a list of "treatments" you had to check, and that didn't include either LDN or diet, or even short dosepak type steroid courses, which are currently the only treatments I have.