Evidence-based Assessment of Medication Sensitivity in Acute Hepatic Porphyria

Summary

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.

Conditions

• Porphyrias

Interventions

OTHER

Web-based Survey

Participants 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.

Sponsors & Collaborators

• University of Texas

  collaborator OTHER

• Wake Forest University Health Sciences

  collaborator OTHER

• University of Miami

  collaborator OTHER

• University of Washington

  collaborator OTHER

• Icahn School of Medicine at Mount Sinai

  collaborator OTHER

• University of Alabama at Birmingham

  collaborator OTHER

• University of California, San Francisco

  collaborator OTHER

• University of Utah

  collaborator OTHER

• National Institutes of Health (NIH)

  collaborator NIH

• University of South Florida

  lead OTHER

Principal Investigators

• D. Montgomery Bissell, MD · University of California, San Francisco

• Bruce Wang, MD · University of California, San Francisco

Eligibility

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2019-04-03

Primary Completion

2019-09-13

Completion

2019-09-13

Countries

• United States

Study Locations