How to report cases
Paediatricians across the UK or Republic of Ireland participate in BPSU eReporting. Each month the BPSU emails an eCard for clinicians to report whether they have seen any cases of the rare diseases we are currently studying. As needed, the study investigators will follow up with further questions. Please look out for an email in your inbox at the start of every month.
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Sign up to receive our eReporting card
If you are a paediatrician in the UK or Republic of Ireland, with an active caseload and working at consultant or SAS level, complete our quick form to get the eReporting card (or 'orange card'). Each month you will be invited to report any or no cases of rare diseases that we are currently studying.
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Reporting instructions for current studies
Here you will find the case definition for each study now on the BPSU eReporting card. You will also find downloadable reporting instructions for each month of 2024.
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Current studies on the eReporting card
On this page you will find more information about the current studies on our eCard and downloadable information such as patient and public information leaflets and protocol cards.
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How to report to the BPSU data collection platform
Our data collection platform to report BPSU cases is easy to use. This page has a video walk through and some frequently asked questions (FAQs). We email all BPSU participants around the 1st of each month to report on any cases, or no cases, on current studies.
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Current studies in follow up
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