ELEVATE, a Registry of Patients With Acute Hepatic Porphyria (AHP)

Annualized Rate of Porphyria Attacks

Porphyria attacks are defined as meeting all of the following criteria: an acute episode of neurovisceral pain in the abdomen, back, chest, extremities and/or limbs, no other medically determined cause, and requires treatment with intravenous (IV) dextrose or hemin, carbohydrates, or analgesics, or other medications such as antiemetics at a dose or frequency beyond the participant's usual daily porphyria management.

Time frame: Up to 6 years

12-Item Short Form Health Survey Version 2 (SF-12 V2) (Standard Version)

S-12 V2 is a 12-question measure capturing global quality of life and overall health status and evaluates the following 8 domains: physical functioning, role physical, bodily pain, general health, vitality, social functioning, role emotional, and mental health.

Time frame: Up to 6 years