MPN PROGRESSion Registry — tracking symptoms, treatments, and disease progression in people with MPNs.
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).
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 |
|---|---|
| Enrollment | 5000 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | MPN Research Foundation Academic / other |
| Locations | 2 sites (Chicago, Illinois and 1 other locations) |
| Trial ID | NCT07362225 on ClinicalTrials.gov |
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.
Who should consider this trial
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.
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.
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 performed: 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.
Eligibility criteria
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 this trial is running
Chicago, Illinois and 1 other locations
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.