ukadultitpregistry.com

[Ann]

I just looked at the information about the registry on the website. I am hoping that the hospital I go to takes part but I always feel there that ITP is seen as not very important compared with the other diseases they deal with which in some ways has to be true, but anyway I hope they get their act together this time.

Also as I was looking at the various forms on the site, I see that no information appears to be gathered about other autoimmune connective tissue disorders that the patents have. The form asked about thryoid disease and diabetes but not SLE, Sjogrens, RA etc. Does this mean that you don't consider those disorders play any part in the course and treatment of ITP?

[Ameet Sarpatwari]

Dear Ann,

I hope that this message finds you well and that your hospital proves responsive in signing up for the Registry. Please don’t hesitate to let us know if you encounter any difficulties.
Importance can be gauged on many levels, and, while it is true that ITP does not burden the general population in a manner similar to diabetes or cardiovascular disease, it is a condition that significantly impacts the daily lives of patients and their families. Additionally, the fact that much information remains unknown regarding the natural progression of the condition in many cases serves to compound the anxiety and suffering experienced by afflicted patients.

You ask an excellent question and managed to spot an error in the annual-information forms that were formerly on the website! Well done! Idiopathic thrombocytopenic purpura (ITP) is a diagnosis of exclusion. Broadly speaking, people meet the definition of this condition if they have low platelet counts in the absence of any known underlying thrombocytopenic-inducing conditions. Thus, the presence of autoimmune conditions such as SLE would technically exclude a diagnosis of ITP.

However, we do know that many autoimmune conditions are linked and that some patients with ITP go on to develop systemic autoimmune conditions. In this sense, we most definitely DO believe that the connective tissue disorders you mention may play an important role in the progression of ITP. We will be assessing their connection with ITP by studying whether or not a patient’s diagnosis of ITP changes following enrolment in the registry. I mistakenly omitted two key questions while updating the six-month and annual-information sheets for the study, namely whether the initial diagnosis of ITP has changed and, if so, to what? These questions are now included in the current version of the documents online. Many thanks for spotting this error!