Prevalence of Acute Hepatic Porphyria

Prevalence of Acute Hepatic Porphyria in Population With Suggestive Clinical Picture

NCT04923516•Association pour la Recherche en Medecine Interne

Summary

To determine the proportion of patients suffering from acute hepatic porphyria (AHP) from different hospital departments and referred to an internist referent for a suggestive clinical picture with a first negative etiological assessment.

Detailed Description

In this context, this study aims to assess the prevalence of PHA in a population of patients with a suggestive clinical picture. A better knowledge of the pathology will make it possible to better guide patients and prevent them from diagnostic wandering fraught with physical and psychological consequences. This is an observational, ambispective, transversal, multicenter study carried out in France. The goal is to recruit a cohort that will reflect current practice. 500 patients will be recruted.

Eligibility

Age

18 - 60 years

Sex

ALL

Healthy Volunteers

Inclusion Criteria

•Man or woman aged 18 to 60;
•Presenting severe abdominal pain, afebrile and diffuse over several days, evolving for less than 5 years;
•With at least one of the following symptoms:
•* Peripheral neurological symptoms: decreased driving force and pain in the limbs (roots of the thighs), etc. ;
•* Central neurological symptoms: psychiatric (depression, anxiety, insomnia), disturbances of consciousness, etc. ;
•* Autonomous neurological symptoms: tachycardia, nausea, vomiting, constipation, etc.
•With a first negative etiological assessment requested by an emergency physician, gastroenterologist, gynecologist, neurologist, internist or another specialty, or with a diagnosis of acute hepatic porphyria less than 6 months;
•Patient able to understand the information related to the study and having indicated his non-objection to the collection of data concerning him;

Exclusion Criteria

•Patient with a diagnosis of acute hepatic porphyria for more than 6 months;
•Patient unfit to participate in the study, due to cognitive or linguistic difficulties;
•Protected patient (under legal protection, or deprived of liberty by judicial or administrative decision).

Locations (1)

Hôpital de la Pitié Salpêtrière

Paris, France

Key Dates

Start Date

August 23, 2021

Primary Completion Date

December 29, 2023

Completion Date

December 29, 2023

Last Updated

January 28, 2026

Enrollment

150

ACTUAL participants

Conditions

Acute Hepatic Porphyria

Interventions

Dosage of Delta-aminolevulinic acid and Porphobilinogen

OTHER

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

NCT04883905

Acute Hepatic Porphyria

View study

Data Source & Attribution

This clinical trial information is sourced from ClinicalTrials.gov, a service of the U.S. National Institutes of Health.

ClinicalTrials.gov last update: January 28, 2026Data synced to Clareo: March 29, 2026

Modifications: This data has been reformatted for display purposes. Eligibility criteria have been parsed into inclusion/exclusion sections. Location data has been geocoded to enable distance-based search. For the authoritative and most current information, please visit ClinicalTrials.gov.

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