PULSE: The Porphyrias U.S. Longitudinal Study of Evaluation

Recruiting-Observational
Written By United Porphyrias

PULSE is the largest study of its kind in the world for people living with porphyria. For more than 15 years, participants have shaped how porphyria is diagnosed and cared for.
Now you can join from anywhere in the U.S.

PULSE, the Porphyria US Longitudinal Study of Evaluation, follows people with every type of porphyria over time. The study tracks symptoms, lab results, treatments, and quality of life.

Participation Interest Form

Who can join PULSE?

We are looking for participants from anywhere in the U.S. All types of porphyria and all ages are welcome!

What does joining PULSE look like?

You’ll have an initial appointment, either in-person at a participating porphyria center or virtually. This visit takes about an hour and may include:

  • Learning about the study and consent with a study coordinator

  • Completing questionnaires about your health history and life

  • Sharing medical records

  • Blood or urine samples

After the initial visit there will be an annual follow-up where you’ll be asked to share records and health information from the previous year, and complete an updated questionnaire.

PULSE Participation Benefits

  • It’s an annual touchpoint with a team that knows porphyria.

  • You can join from home, and a coordinator guides you through each step.

  • It’s free, and there are no experimental drugs.

  • It helps doctors recognize porphyria sooner and care for it better, for you and the next person diagnosed.

  • It gives researchers and drug developers real-world evidence to design better trials.

  • Your experience becomes part of the largest porphyria study in the world.

Interested in Participating?

Complete an interest and a study coordinator will be in touch!

Interest Form

PULSE has already made a difference!

Since 2009, about 1,300 people have participated in this study. Their participation has resulted in more than 80 scientific publications, changing the way porphyria is cared for and understood. Some of the

  • The development of new treatments for EPP & XLP and the acute hepatic porphyrias.

  • Identifying the need for liver cancer screening in AHP for those over 50.

  • Developing care guidelines for EPP and XLP, and recommendations for protoporphyria-related liver disease.

Thank you too everyone who participates in PULSE!
Together we can make a world free from the pain and challenges of porphyria.


United Porphyrias
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