Participate in Research

NOW RECRUITING

Participant recruitment is now underway for the APOLLO Study, a clinical trial evaluating Bitopertin, an investigational oral medication for individuals with Erythropoietic Protoporphyria (EPP) or X-Linked Protoporphyria (XLP). The study aims to assess whether Bitopertin can reduce protoporphyrin IX levels and potentially lessen symptoms from sun exposure.

Fast Facts:

  • Study Type: Phase 3, Multicenter, Randomized, Double-Blind, Placebo-Controlled

  • Who Can Participate? Individuals age 12+ with a confirmed diagnosis of EPP or XLP

  • Study Medication: Investigational oral therapy (Bitopertin)

  • Study Sites: Ontario and Alberta

  • Travel & related expenses covered by the study sponsor

  • Includes an optional open-label extension

If you are interested, please complete the confidential interest form below and be connected to a site near you. Filling out the form does not obligate you to participate.

For more information, contact: president@porphyriacanada.ca.

Do you have acute hepatic porphyria (AHP)?

An interview study is underway to understand patient experiences with acute hepatic porphyria.

We are looking for individuals ages 15 and over in the United States or Canada who have acute hepatic porphyria (AHP).

As part of this study, you will complete a one-on-one approximately 90-minute telephone or video conference interview scheduled at a time that works well for you, and you will later fill out three online questionnaires that take approximately 20 minutes to complete.

You will receive $150.00 USD or Canadian equivalent as compensation for your time to participate.

This is not a medication-related study. No medication will be given or tested during this study.

The information you share may contribute to knowledge about acute hepatic porphyria (AHP).

Your name and contact information will remain only with the research team and will notbe shared.

Please note, you/your child may not be eligible for the study if you/your child: have taken GIVLAARI (givosiran) or hemin prophylaxis within the past six months; reside in Alberta, Saskatchewan or Newfoundland and Labrador; are between the ages of 15-17 and reside in Quebec; or have certain medical conditions.

For more information or if you wish to participate, please reference the study code: AX10047A Acute Hepatic Porphyria Study and contact us:

  • By email at ResearchStudy@adelphivalues.com to learn more about the study, ask any questions, or schedule a time to be screened.

  • By telephone at (617) 720-0001. Please leave a voicemail with your name, telephone number where you can be reached, and the study code (AX10047A), and the recruitment coordinator will follow up to provide more information answer questions or schedule a screening.