CompletedNot Applicable

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

United States136 participantsStarted 2014-08

Plain-language summary

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

Who can participate

Age range12 Years

SexALL

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AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria: * 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 Exclusion Criteria: • Current participation in a clinical trial of an investigational product

What they're measuring

Medical history of AHP patients (Part A only)

Timeframe: Baseline to 6-Month Follow-Up Visit

Medication usage of AHP patients (Part A only)

Timeframe: Baseline to 6-Month Follow-Up Visit

Trial details

NCT IDNCT02240784

SponsorAlnylam Pharmaceuticals

Sponsor typeINDUSTRY

Study typeOBSERVATIONAL

Primary completion2021-04-26

View on ClinicalTrials.gov More Acute Hepatic Porphyria trials