EXPLORE: A Natural History Study of Acute Hepatic Porphyria (AHP)

a study on Acute Hepatic Porphyria

Summary

Eligibility
for people ages 12 years and up (full criteria)
Location
at San Francisco, California and other locations
Dates
study started
estimated completion

Description

Summary

The purpose of this study is to characterize the natural history and clinical management of Acute Hepatic Porphyria (AHP) patients with recurring attacks.

Official Title

A Natural History Study of Acute Hepatic Porphyria (AHP) Patients With Recurrent Attacks

Keywords

Acute Hepatic Porphyria Porphyria AIP VP HCP Variegate Coproporphyria Porphyrias, Hepatic Coproporphyria, Hereditary Porphyria, Erythropoietic Porphyrias

Eligibility

You can join if…

Open to people ages 12 years and up

  • Males and females aged >/= 12 years
  • Diagnosis of AHP [acute intermittent porphyria (AIP), variegate porphyria (VP), hereditary coproporphyria (HCP) and aminolevulinic acid dehydratase (ALAD) deficient porphyria (ADP)]
  • Porphyria attacks in the past 12 months or receiving treatment to prevent attacks
  • Willing to provide written informed consent, medical records, and to comply with study requirements

You CAN'T join if...

• Current participation in a clinical trial of an investigational product

Locations

  • Clinical Trial Site accepting new patients
    San Francisco California 94143 United States
  • Clinical Trial Site accepting new patients
    Salt Lake City Utah 84112 United States

Details

Status
accepting new patients
Start Date
Completion Date
(estimated)
Sponsor
Alnylam Pharmaceuticals
ID
NCT02240784
Study Type
Observational
Last Updated