deltatrials
Active Not Recruiting INTERVENTIONAL NCT04610866

Safety, Tolerability, Pharmacokinetics, and Pharmacodynamics of Long-term Mitapivat Dosing in Subjects With Stable Sickle Cell Disease: An Extension of a Phase I Pilot Study of Mitapivat

Evaluation of the Safety,Tolerability, Pharmacokinetics, and Pharmacodynamics of Long-term Mitapivat Dosing in Subjects With Stable Sickle Cell Disease: An Extension of a Phase I Pilot Study of Mitapivat

Sponsor: National Heart, Lung, and Blood Institute (NHLBI)

Interventions Mitapivat
Updated 47 times since 2020 Last updated: Apr 24, 2026 Started: Dec 9, 2020 Primary completion: Feb 28, 2028 Completion: Feb 28, 2028
This information is for research purposes only and is not medical advice. Consult a healthcare provider before making any medical decision.

A observational or N/A phase clinical study on Hemolytic Anemia and Sickle Cell Disease, this trial is ongoing. The trial is conducted by National Heart, Lung, and Blood Institute (NHLBI) and has accumulated 47 data snapshots since 2020. Longitudinal tracking of this trial contributes to a broader understanding of treatment development timelines.

Study Description(click to expand)

Study Description: The objective of this extension study is to evaluate the safety and tolerability of mitapivat (AG-348) as long-term maintenance therapy for subjects with sickle cell disease (SCD) who have completed the Phase I dose escalation study of mitapivat (NCT04000165, protocol 19H0097). Subjects will be treated with a maintenance dose of mitapivat previously assessed for safety and tolerability in the Phase I study for an initial 48 weeks and undergo safety monitoring, evaluation of pharmacokinetics and pharmacodynamics, and assessment of secondary clinical endpoints at regular intervals over the study period. Exploratory endpoints will allow for investigation of the mechanisms by which mitapivat may modulate red cell metabolism and survival and lead to clinical benefits in SCD. Subjects benefiting from the study drug will have the option to continue therapy for an additional years. Objectives: Primary Objective: \- To assess the long-term safety and tolerability of mitapivat in subjects with stable sickle cell disease. Secondary Objectives: * To evaluate the pharmacokinetic/pharmacodynamic profile of long-term dosing of mitapivat, as well as its mechanisms of action on the glycolytic pathway in SCD subjects. * To evaluate hemoglobin (Hb) response, changes in hemolytic markers, functional status, cardiopulmonary function, and health-related quality of life...

Study Description:

The objective of this extension study is to evaluate the safety and tolerability of mitapivat (AG-348) as long-term maintenance therapy for subjects with sickle cell disease (SCD) who have completed the Phase I dose escalation study of mitapivat (NCT04000165, protocol 19H0097). Subjects will be treated with a maintenance dose of mitapivat previously assessed for safety and tolerability in the Phase I study for an initial 48 weeks and undergo safety monitoring, evaluation of pharmacokinetics and pharmacodynamics, and assessment of secondary clinical endpoints at regular intervals over the study period. Exploratory endpoints will allow for investigation of the mechanisms by which mitapivat may modulate red cell metabolism and survival and lead to clinical benefits in SCD. Subjects benefiting from the study drug will have the option to continue therapy for an additional years.

Objectives:

Primary Objective:

\- To assess the long-term safety and tolerability of mitapivat in subjects with stable sickle cell disease.

Secondary Objectives:

* To evaluate the pharmacokinetic/pharmacodynamic profile of long-term dosing of mitapivat, as well as its mechanisms of action on the glycolytic pathway in SCD subjects. * To evaluate hemoglobin (Hb) response, changes in hemolytic markers, functional status, cardiopulmonary function, and health-related quality of life in SCD subjects maintained on mitapivat long-term. * To monitor SCD-related safety endpoints in SCD subjects maintained on mitapivat long-term.

Tertiary/Exploratory Objectives:

\- To assess the feasibility and usability of digital health technology in a drug trial for patients with SCD.

Endpoints:

Primary Endpoints:

\- Frequency and severity of AEs and changes in clinical and laboratory parameters over 8 years of therapy with mitapivat.

Secondary Endpoints:

* Change from baseline in pharmacokinetic and pharmacodynamic measures over time. * Hemoglobin (Hb) response and changes in hemolytic markers at 24 and 48 weeks on mitapivat. * Sustained Hb response from weeks 12-48. * Change from baseline in functional and cardiopulmonary status at 24 and 48 weeks on mitapivat. * Change from baseline in quality of life at 24 and 48 weeks on mitapivat. * Frequency of acute vaso-occlusive clinical events at 24 and 48 weeks on mitapivat.

Tertiary/Exploratory Endpoints:

\- Usability of SCD Warrior digital Microhealth application (app) by providers and participants through simple feedback tools at each protocol visit reviewing ease of use and patient satisfaction.

Status Flow

~Dec 2020 – ~Jan 2021 · 31 days · monthly snapshot~Jan 2021 – ~Feb 2021 · 31 days · monthly snapshot~Feb 2021 – ~Mar 2021 · 28 days · monthly snapshot~Mar 2021 – ~Apr 2021 · 31 days · monthly snapshot~Apr 2021 – ~Sep 2021 · 5 months · monthly snapshot~Sep 2021 – ~Oct 2021 · 30 days · monthly snapshot~Oct 2021 – ~Dec 2021 · 2 months · monthly snapshot~Dec 2021 – ~Jan 2022 · 31 days · monthly snapshot~Jan 2022 – ~Feb 2022 · 31 days · monthly snapshot~Feb 2022 – ~Apr 2022 · 59 days · monthly snapshot~Apr 2022 – ~May 2022 · 30 days · monthly snapshot~May 2022 – ~Jun 2022 · 31 days · monthly snapshot~Jun 2022 – ~Jul 2022 · 30 days · monthly snapshot~Jul 2022 – ~Sep 2022 · 2 months · monthly snapshot~Sep 2022 – ~Nov 2022 · 2 months · monthly snapshot~Nov 2022 – ~Dec 2022 · 30 days · monthly snapshot~Dec 2022 – ~Jan 2023 · 31 days · monthly snapshot~Jan 2023 – ~Feb 2023 · 31 days · monthly snapshot~Feb 2023 – ~May 2023 · 3 months · monthly snapshot~May 2023 – ~Jun 2023 · 31 days · monthly snapshot~Jun 2023 – ~Aug 2023 · 2 months · monthly snapshot~Aug 2023 – ~Sep 2023 · 31 days · monthly snapshot~Sep 2023 – ~Oct 2023 · 30 days · monthly snapshot~Oct 2023 – ~Nov 2023 · 31 days · monthly snapshot~Nov 2023 – ~Dec 2023 · 30 days · monthly snapshot~Dec 2023 – ~Jan 2024 · 31 days · monthly snapshot~Jan 2024 – ~Feb 2024 · 31 days · monthly snapshot~Feb 2024 – ~Mar 2024 · 29 days · monthly snapshot~Mar 2024 – ~Apr 2024 · 31 days · monthly snapshot~Apr 2024 – ~May 2024 · 30 days · monthly snapshot~May 2024 – ~Jul 2024 · 2 months · monthly snapshot~Jul 2024 – ~Aug 2024 · 31 days · monthly snapshot~Aug 2024 – ~Sep 2024 · 31 days · monthly snapshot~Sep 2024 – ~Oct 2024 · 30 days · monthly snapshot~Oct 2024 – ~Nov 2024 · 31 days · monthly snapshot~Nov 2024 – ~Dec 2024 · 30 days · monthly snapshot~Dec 2024 – ~Jan 2025 · 31 days · monthly snapshot~Jan 2025 – ~Feb 2025 · 31 days · monthly snapshot~Feb 2025 – ~Mar 2025 · 28 days · monthly snapshot~Mar 2025 – ~Jun 2025 · 3 months · monthly snapshot~Jun 2025 – ~Jul 2025 · 30 days · monthly snapshot~Jul 2025 – ~Sep 2025 · 2 months · monthly snapshot~Sep 2025 – ~Jan 2026 · 4 months · monthly snapshot~Jan 2026 – ~Feb 2026 · 31 days · monthly snapshot~Feb 2026 – ~Apr 2026 · 3 months · monthly snapshotApr 21, 2026 – Apr 28, 2026 · 7 days · daily APIApr 28, 2026 – present · 3 months · daily API

Change History

47 versions recorded
  1. Apr 28, 2026 — Present [daily]

    Active Not Recruiting

  2. Apr 21, 2026 — Apr 28, 2026 [daily]

    Active Not Recruiting

    Phase: PHASE1/PHASE2None

  3. Feb 2026 — Apr 2026 [monthly]

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  4. Jan 2026 — Feb 2026 [monthly]

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  5. Sep 2025 — Jan 2026 [monthly]

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Show 42 earlier versions
  1. Jul 2025 — Sep 2025 [monthly]

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  10. Aug 2024 — Sep 2024 [monthly]

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  11. Jul 2024 — Aug 2024 [monthly]

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    Phase: PHASE1_PHASE2PHASE1/PHASE2

  12. May 2024 — Jul 2024 [monthly]

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  13. Apr 2024 — May 2024 [monthly]

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  14. Mar 2024 — Apr 2024 [monthly]

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  15. Feb 2024 — Mar 2024 [monthly]

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  16. Jan 2024 — Feb 2024 [monthly]

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  26. Dec 2022 — Jan 2023 [monthly]

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  27. Nov 2022 — Dec 2022 [monthly]

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    Status: RecruitingActive Not Recruiting

  28. Sep 2022 — Nov 2022 [monthly]

    Recruiting PHASE1_PHASE2

  29. Jul 2022 — Sep 2022 [monthly]

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  34. Jan 2022 — Feb 2022 [monthly]

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  35. Dec 2021 — Jan 2022 [monthly]

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  36. Oct 2021 — Dec 2021 [monthly]

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  37. Sep 2021 — Oct 2021 [monthly]

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  38. Apr 2021 — Sep 2021 [monthly]

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  39. Mar 2021 — Apr 2021 [monthly]

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  40. Feb 2021 — Mar 2021 [monthly]

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  41. Jan 2021 — Feb 2021 [monthly]

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  42. Dec 2020 — Jan 2021 [monthly]

    Recruiting PHASE1_PHASE2

    First recorded

Eligibility Summary

Background: Sickle cell disease (SCD) is a disorder that causes episodes of acute pain and progressive organ damage. Ways to manage SCD have evolved slowly. Treatments do not always work. Researchers want to see if a drug called mitapivat can help people with SCD. Objective: To test the long-term tolerability and safety of mitapivat (or AG-348) in people with SCD. Eligibility: Adults age 18-70 with SCD who took part in and benefited from NIH study #19H0097. Design: Participants will be screened with a medical history and physical exam. They will give a blood sample. They will have an electrocardiogram to test heart function. Participants will repeat some of the screening tests during the study. Participants will complete 6-minute walk tests to measure mobility and function. They will have transthoracic echocardiograms to measure heart and lung function. They will have dual-energy X-ray absorptiometry scans to measure bone health. They will complete online questionnaires that measure their overall health and well-being. Participants will take the study drug in the form of a tablet twice a day. Participants will keep a study diary. They will record any symptoms they may have. Participation will last for about 54 weeks. After 48 weeks, participants can either keep taking the study drug for 48 more weeks or be tapered off of the study drug to complete the study. Those who are on the study for 1 year will have 10 study visits. Those who are on the study for 2 years will have 14 study visits.

Contact Information

Sponsor contact:
  • National Heart, Lung, and Blood Institute (NHLBI)
Data source: ClinicalTrials.gov

For direct contact, visit the study record on ClinicalTrials.gov .

Study Locations