Evidence-based Assessment of Medication Sensitivity in Acute Hepatic Porphyria
Evidence-based Assessment of Medication Sensitivity in Acute Hepatic Porphyria
This is an observational study collecting patient/caregiver reports on suspected
 medication/drug-induced acute porphyria attacks, as well as safe use of drugs previously
 labeled "unsafe" or with unknown risk. Participants will be recruited through the RDCRN
 Contact Registry for the Porphyrias Consortium. The study will be advertised on the
 Consortium website and through the American Porphyria Foundation's social media network.
Contact Registrants will be sent an email invitation describing the study. A unique link will
 be generated for each registrant and included in the email invitation. After 2 weeks, a
 second email invitation will be sent to the registrants who have not yet participated. After
 1 month, a third email invitation will be sent to the registrants who have not yet
 participated. We may send additional emails periodically (e.g. every 6-12 months) to subjects
 enrolled to remind them to complete new surveys if they have taken any other medications of
 interest or have experienced any new reactions/attacks.

 If the registrant wants to participate in the study, he/she will follow the survey link in
 the email invitation, which directs him/her to an IRB-approved online consent form. If the
 participant consents to participate, he/she will be directed to online forms to report
 general information (ex. age, sex, test results, family history), suspected
 medication-related acute attacks, and "uneventful use of possibly risky medication". If a
 patient has multiple medication-related acute attacks, the patient/caregiver will be able to
 submit multiple report forms that will be linked. In addition to the report forms, patients
 will be asked to review a list of "Medications of Interest" and report current or past use.
Inclusion Criteria:

 -  Able to read and write in English

 -  Enrolled in the RDCRN PC Contact Registry

 -  Self-reported patient or caregiver of patient with acute porphyria

 There are no restrictions on age, sex or ethnicity. However, the following criteria will be
 applied to those reports that are considered evaluable (analyzed and scored):

 1. Medication name must be specified

 2. The data elements required in the scoring system must be complete

 Exclusion Criteria:

 -  Unable to provide informed consent and complete forms