Lifeline drug mitapivat keeps flowing for rare blood disorder patients

NCT ID NCT05777993

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study offers continued access to the drug mitapivat for adults with pyruvate kinase deficiency who completed an earlier Agios-sponsored trial and cannot get the drug commercially. Only 6 participants are enrolled, and the main goal is to monitor side effects. The study does not test new treatments but ensures those who benefited can keep taking mitapivat.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

Active substance

mitapivat (tablet)

What this could lead to

If successful, this study ensures uninterrupted treatment for people with pyruvate kinase deficiency who lack commercial access.

What could go wrong

This is a small rollover study (6 participants) focused on safety and continued access, not on proving new benefits. Side effects remain possible.

Disclaimer Read more

This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

Get updates

Get notified about this study

Sign up to get updates when this study changes or when new studies for PYRUVATE KINASE DEFICIENCY are added.

Our safety recommendation!

By submitting, you agree to our Terms of use

Conditions

The condition(s) this trial relates to.

hemolytic anemia pyruvate kinase deficiency of red cells

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Contacts and locations

Locations

  • Kyoto Katsura Hospital

    Kyoto, 615-8256, Japan

  • McMaster Centre for Transfusion Medicine McMaster University

    Hamilton, Ontario, L8S3Z5, Canada

  • Toho University - Omori Medical Center

    Ōta-ku, 143-8541, Japan

  • Tohoku University Hospital

    Sendai, Miyagi, 980-8574, Japan