Top Tweets for #HaemSTARUpdate
Really great to spend a few days with this brilliant group of people in Newcastle for @HaemSTAR_UK's #HaemSTARUpdate and post ASH/ISTH non-malignant haem highlights. Thanks all!
ITP treatment has changed during COVID pandemic - results from @UKITPR. Steroid use didn't decrease, ritux dropped +++, TPORA use increased a lot
#HaemSTARUpdate
Vickie McDonald presents output from the >5,000 pt strong UK adult ITP registry (@UKITPR). Key statement: want to work with clinicians interested in looking at data and writing papers. #HaemSTARUpdate
Noรฉmi Roy's research priorities for #SickleCellDisease. Can we design a better way to improve measurement of pain?
Can HaemSTAR support?
YES, YES, YES WE CAN
If you're interested, please get in touch.
#HaemSTARUpdate
Noรฉmi Roy tells us about "Rudy" an online data capture tool used for #SickleCellDisease QoL study.
#HaemSTARUpdate
Noรฉmi Roy giving an absolutely brilliant talk on pain in sickle cell disease. Not your average lecture. Insightful, provocative, surprising. #HaemSTARUpdate
@rjshaw64 presents data from ConNeCT, a questionnaire based study of long term neuro complications of TTP. 9 centres in UK open. 130 patients recruited so far. < half patients could return to the same job role/hours after diagnosis. 30% mod-severe depression. #HaemSTARUpdate
Christina presents data on A2PLS, our audit of antiphospholipid syndrome. 500 patients (wow, that's huge!). 70% patients on VKA, also only 70% with hx of arterial thrombosis on VKA. 40% had recurrent thrombosis at 10y, higher in arterial group (again, wow!) #HaemSTARUpdate
Results from our two sample rule survey: 2/3 respondents (ED docs) said they had taken two samples at the same time and labelled them as different times. Highly valuable real world data showing power of HaemSTAR. #HaemSTARUpdate
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