Most of the patient data is generalised around specific case numbers, given the rare nature of the condition, but national distribution is difficult to discern with accuracy outside of individual cases. Is there any work where patient numbers have been tallied? This would help inform the evidence that of the number of cases per million and help set the benchmark for this rare disease at the right level, and capture any differences between countries (also trying to capture impact of ethnicity).
Syed Uzair Ahmad
No formal study herein so far. If you are interested i can conduct an epidemiological study.
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