Boston, MANCT07567131Now EnrollingIRB Ready

Erythropoietic Protoporphyria (EPP) Clinical Trial in Boston, MA

Access cutting-edge erythropoietic protoporphyria (epp) treatment through this clinical trial at a research site in Boston. Study-provided care at no cost to qualified participants.

Sponsored by Portal Therapeutics, Inc.

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Expert Care in Boston

Access erythropoietic protoporphyria (epp) specialists at no cost

IRB Approved

This study follows strict safety protocols and ethical guidelines

No-Cost Care

All study-related erythropoietic protoporphyria (epp) treatment provided free

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Check if you qualify for this erythropoietic protoporphyria (epp) clinical trial in Boston, MA

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Why Participate?

  • No-Cost Study Care

  • Local to Boston

    Convenient for MA residents

  • Cutting-Edge Treatment

    Access to innovative therapies

  • Expert Medical Care

    Close monitoring by specialists

  • Possible Compensation*

    For time and travel

*Compensation varies by study. Confirm details with coordinator.

Simple Process

  1. 1Submit this form
  2. 2Phone screening
  3. 3Visit Boston site if eligible
  4. 4Begin participation

About This Erythropoietic Protoporphyria (EPP) Study in Boston

The purpose of this study is to collect information about the effects of EPP/XLP in adults and adolescents. This is an observational study in which participants will not receive any treatment. Study details include: * The study duration will be up to 6 months for each participant. * After Screening, participants will have a Baseline (Day 1) visit and return for visits every 4 weeks through 24 weeks. * Assessments to evaluate EPP/XLP will include clinical laboratory tests, physical exams, vital signs measurement, blood draws for PPIX concentration, reporting of EPP/XLP-related symptoms (including completion of a daily diary), light dosimetry.

Sponsor: Portal Therapeutics, Inc.

Who Can Participate

Inclusion Criteria

Aged 12 years and older.
Confirmed diagnosis of EPP or XLP as follows:
Genetic confirmation of EPP (FECH mutation with reduced ferrochelatase activity) OR
Genetic confirmation of XLP (ALAS2 gain-of-function mutation) OR
Elevated free PPIX levels in RBCs consistent with EPP/XLP, supported by clinical and/or family history.
Currently has symptoms of EPP/XLP.
History of consistent, non-painful prodrome within approximately 45 minutes of sunlight exposure and prior to phototoxic attacks, as self-reported by the participant.
Willing and able to wear a light dosimetry device during the study.
Willing and able to complete a daily diary of EPP/XLP symptoms.
Willing and able to keep skin sites chosen for provocative sunlight exposure testing covered by opaque material when outside or exposed to potentially triggering light beginning 2 days prior to testing.
Willing and able to provide informed consent and/or assent for the study.
Study participants and LAR (as appropriate) are willing and able to comply with study visits and study procedures.

Exclusion Criteria

Diagnosis of another porphyria or another photodermatosis that may confound the characterization of EPP/XLP.
Has a clinically significant disease or condition that, at the discretion of the Investigator or Sponsor, would interfere with the evaluation of EPP/XLP or study participation, or would make study participation not in the best interest of the participant.
Is taking, or has taken within 60 days of Day 1, any medication, vitamin, or supplement that alters sensitivity to light exposure (eg, afamelanotide, melanotan, beta carotene, dersimelagon, or bitopertin).
Concurrent or anticipated participation in an interventional clinical trial during the study period.

Not sure if you qualify? Submit your interest and a study coordinator will help determine your eligibility.

Frequently Asked Questions

Q:Is this study available in Boston?

Yes, this clinical trial (NCT07567131) has an active research site in Boston, MA that is currently enrolling participants.

Q:Is it safe to participate?

Clinical trials follow strict safety guidelines and ethical standards. This study has been reviewed and approved, and participants are closely monitored by medical professionals. You can withdraw at any time.

Q:Will I be compensated?

Many clinical trials offer compensation for your time and travel expenses. Specific compensation details will be discussed during the screening process. All study-related medical care is provided at no cost.

Q:Can I leave the trial if I change my mind?

Absolutely. Participation is completely voluntary. You have the right to withdraw from the study at any time, for any reason, without penalty.

Still have questions? Our study coordinators are here to help.

Erythropoietic Protoporphyria (EPP) Treatment Options in Boston, MA

If you're searching for erythropoietic protoporphyria (epp) treatment options in Boston, MA, this clinical trial (NCT07567131) may be an excellent opportunity. Clinical trials provide access to cutting-edge treatments that aren't yet available to the general public, often at no cost to participants.

Our Boston research site is actively enrolling participants for this clinical trial. You'll receive care from experienced erythropoietic protoporphyria (epp) specialists who are at the forefront of medical research. All study-related care, including examinations, treatments, and monitoring, is provided at no cost to qualified participants.

Looking for more options? Browse all erythropoietic protoporphyria (epp) clinical trials near you to find additional studies recruiting in your area.

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