Massive new study aims to unlock secrets of rare blood cancers
NCT ID NCT07362225
First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time
Summary
This long-term observational study is enrolling 5,000 adults with myeloproliferative neoplasms (MPNs)—rare blood cancers like polycythemia vera and myelofibrosis. Researchers will collect health records, patient surveys, and insurance data over at least five years to track symptoms, treatments, and how the disease progresses. The goal is to find patterns that could lead to better care and future treatments.
What this could mean
Our plain-language read of the trial. This is informational only, not medical advice or a prediction.
- What this could lead to
- If successful, this registry could reveal patterns that help doctors predict disease progression and improve treatment guidelines for MPN patients.
- What could go wrong
- This is an observational study, not a treatment trial, so it won't directly test new therapies. Results depend on data quality and may take years to yield actionable insights.
This is an AI summary of the original study and may miss details. Read our disclaimer.
Study facts
What this study's own registry entry says, in plain language.
- Participants
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About 5,000 people
The number the study aims to enrol. It can still change while the study runs.
- Started
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Sep 2025
- Expected to finish
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Sep 2035
An estimate. End dates often move.
- Lead sponsor
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Other sponsor
The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.
Who can take part
This study's own entry requirements. Only the study team can say for certain whether you qualify.
Who is studied
Adults (18 years and older) diagnosed with a myeloproliferative neoplasm (MPN), including polycythemia vera, essential thrombocythemia, primary myelofibrosis, secondary myelofibrosis, pre-fibrotic primary myelofibrosis, MPN-unclassifiable, MPN-accelerated phase, or MPN-blast phase, post-MPN AML, or MDS/MPN overlap syndrome (including patients originally diagnosed with one of these conditions but who have received one or more SCTs or BMTs) residing in the United States. Participants are enrolled exclusively through direct-to-patient outreach using online recruitment, social media, digital advertising, and patient advocacy networks. All participants must provide electronic informed consent, have accessible electronic health record (EHR) data, and be willing to complete digital patient-reported outcome surveys. The study aims to capture a diverse national cohort for real-world, longitudinal research on disease progression, treatment patterns, and outcomes .
- Ages
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18 years and older
- Sex
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Anyone
- Healthy volunteers
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Not accepted
This study is not open to healthy volunteers. The entry requirements below say who it is open to.
Show the full entry requirements Hide the full entry requirements
Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
Inclusion Criteria: * Adults aged 18 years or older at the time of enrollment. * Confirmed diagnosis of a myeloproliferative neoplasm (MPN), including one or more of the following subtypes, according to WHO 2022 criteria, including patients originally diagnosed with one of these conditions but who have received one or more stem cell transplants (SCTs) or bone marrow transplants (BMTs): * Polycythemia vera (PV) * Essential thrombocythemia (ET) * Primary myelofibrosis (PMF) * Secondary myelofibrosis (post-ET or post-PV MF) * Pre-fibrotic primary myelofibrosis (pre-PMF) * Myeloproliferative neoplasm-unclassifiable (MPN-U) * Myeloproliferative neoplasm, accelerated phase (MPN-AP) * Myeloproliferative neoplasm, blast phase (MPN-BP) * Post-MPN acute myeloid leukemia (AML) * Myelodysplastic syndrome (MDS)/MPN overlap syndrome * Myeloproliferative neoplasm, blast phase (MPN-BP) * Ability to provide informed consent electronically or through a legally authorized representative. * Willingness to share health information, including electronic health records (EHR), laboratory values, and survey responses. * Willingness to complete periodic patient-reported outcome (PRO) surveys and symptom tracking assessments. Exclusion Criteria: * Individuals under 18 years of age. * Inability to provide informed consent, either directly or through a legally authorized representative. * Currently enrolled in an interventional clinical trial where participation would interfere with the ability to participate in this observational registry (based on investigator or sponsor judgment). * Any condition that, in the judgment of the study team, would make participation in the registry infeasible or unsafe.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
How to take part
Only the study team decides who joins. These are the ways to reach them.
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The places running it
2 sites. The list below names each one and where it is.
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The official record
ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.
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A doctor treating you
A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.
Contacts and locations
Locations
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MPN Research Foundation
RECRUITINGChicago, Illinois, 60654, United States
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Memorial Sloan Kettering Cancer Center
RECRUITINGNew York, New York, 10065, United States
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