MPN PROGRESSion Registry — tracking symptoms, treatments, and disease progression in people with MPNs.
Official title: The MPN PROGRESSion Registry: A Retrospective and Prospective Observational Study Collecting Patient-Reported Outcomes, Electronic Health Records, and Claims Data to Track Symptoms, Treatments, and Disease Progression in Individuals Diagnosed With Myeloproliferative Neoplasms (MPNs).
Run by MPN Research Foundation · NCT07362225 · Data updated 2026-11-12
Track long-term symptoms, treatments, and disease progression in adults with myeloproliferative neoplasms to see how these conditions evolve over time.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 18 Years and up |
| Sex | All |
| Enrollment | 5000 (estimated) |
| Sponsor | MPN Research Foundation Academic / other |
| Locations | 2 sites (Chicago, Illinois and 1 other locations) |
| Status | Recruiting |
| Started | September 26, 2025 |
| Main results expected | September 8, 2035 |
| Study ends | September 8, 2035 |
| Registry record updated | January 23, 2026 |
| Trial ID | NCT07362225 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Adults (age ≥18) with a confirmed WHO 2022 diagnosis of an MPN subtype (including PV, ET, primary/secondary MF, pre-PMF, MPN-U, MPN-AP/BP, post-MPN AML, or MDS/MPN overlap) who can provide informed consent and share their medical records and patient-reported data.
✕Probably not a fit
Patients seeking experimental therapies or immediate therapeutic benefit, or those unable or unwilling to provide consent, EHR/claims access, or regular follow-up, are unlikely to receive direct clinical benefit from participation.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
The MPN PROGRESSion Registry is a U.S.-based, prospective, non-interventional cohort that follows adults with WHO 2022–defined myeloproliferative neoplasms to collect long-term clinical outcomes, treatment patterns, symptom burden, quality of life, and healthcare utilization. It enrolls a broad range of MPN subtypes, including PV, ET, primary and secondary MF, pre-PMF, MPN-U, accelerated/blast-phase MPN, post-MPN AML, and MDS/MPN overlap, and includes patients who have had stem cell or bone marrow transplants. The registry integrates structured EHR extraction, patient-reported outcome surveys, medical claims data, and potential future linkages with external disease registries to build a multimodal real-world dataset. Participants are expected to enroll over at least five years, with many followed for ten years or longer to characterize disease trajectories and long-term outcomes.
Why it matters
Potential benefit: If successful, the registry could help clinicians make better monitoring and treatment decisions by revealing real-world patterns of progression, symptom burden, and healthcare use across MPN subtypes.
How similar studies have gone: Other MPN registries and observational cohorts have generated useful real-world insights into disease course and treatment patterns, although this registry's multimodal, long-term linkage of EHRs, claims, and PROs is comparatively comprehensive and somewhat novel.
Who can join: the full rules
Show full inclusion / exclusion criteria
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.
Where it's running
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MPN Research Foundation
Chicago, Illinois, United States Recruiting -
Memorial Sloan Kettering Cancer Center
New York, New York, United States Recruiting
Study contacts
- Principal investigator: Raajit Rampal, MD, PhD — Memorial Sloan Kettering Cancer Center
- Study coordinator: Stephanie Scobey, MPN, BS, RN
- Email: sscobey@mpnrf.org
- Phone: 847-449-5307
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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PRT12396 for people with high-risk polycythemia vera or myelofibrosis
The team will try the oral drug PRT12396 in people with high-risk polycythemia vera or myelofibrosis to find safe doses and look for early signs of benefit.
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National registry for people with myelofibrosis and anemia in Germany.
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Evaluating the safety and effectiveness of bomedemstat for blood disorders
This study is trying to see how safe and effective bomedemstat is for people with blood disorders like essential thrombocythemia and myelofibrosis who have been doing well on the treatment for at least six months.
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Combining Momelotinib and Luspatercept for Myelofibrosis Treatment
This study is testing if combining two medications, momelotinib and luspatercept, can help people with myelofibrosis who need blood transfusions feel better and reduce their transfusion needs.
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Evaluating DISC-0974 for treating anemia in myelofibrosis patients
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.