Actively Recruiting
The MPN PROGRESSion Registry: Observational Study Collecting Patient-Reported Outcomes and Health Records to Track Symptoms, Treatments, and Disease Progression in Myeloproliferative Neoplasms
Led by MPN Research Foundation · Updated on 2026-01-23
5000
Participants Needed
2
Research Sites
N/A
Total Duration
On this page
Sponsors
M
MPN Research Foundation
Lead Sponsor
S
Sobi, Inc.
Collaborating Sponsor
AI-Summary
What this Trial Is About
Researchers are conducting the MPN PROGRESSion Registry, a long-term observational study to better understand myeloproliferative neoplasms (MPNs), a group of rare, chronic blood cancers including polycythemia vera, essential thrombocythemia, myelofibrosis, and related subtypes. The study aims to collect real-world data on disease progression, treatments, symptoms, and quality of life from a diverse population to identify factors influencing outcomes and improve future care and research. This registry is non-interventional, with patients continuing their usual medical care. Participants will share health information including electronic health records, laboratory results, insurance claims, and patient-reported outcomes such as symptom surveys. These surveys include assessments of fatigue, mental health, and quality of life, collected every three to six months. The study plans to enroll about 1,500 adults diagnosed with various MPN subtypes, some having had stem cell or bone marrow transplants. Data will be gathered and analyzed for at least five years, with many participants followed for ten years or more, to track disease changes and patient experiences over time. During the study, participants will complete regular surveys and symptom tracking tools, while researchers review medical records and claims data to monitor clinical status and treatments. The main outcome measured is time to disease progression, with secondary measures including survival, symptom scores, and quality of life assessments. Privacy and data security are priorities, and participants can withdraw at any time without impacting their care. Results will help guide future research, clinical guidelines, and support patient-centered care in MPNs.
CONDITIONS
Brief Title
MPN PROGRESSion Registry: Observational Study Tracking Symptoms, Treatments, and Disease Progression in People With Myeloproliferative Neoplasms (MPNs)
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Adults aged 18 years or older at the time of enrollment.
- Confirmed diagnosis of a myeloproliferative neoplasm (MPN) subtype according to WHO 2022 criteria, including polycythemia vera, essential thrombocythemia, primary or secondary myelofibrosis, pre-fibrotic primary myelofibrosis, MPN-unclassifiable, accelerated or blast phase MPN, post-MPN acute myeloid leukemia, or MDS/MPN overlap syndrome.
- Patients who have received one or more stem cell transplants or bone marrow transplants are eligible.
- Ability to provide informed consent electronically or through a legally authorized representative.
- Willingness to share health information including electronic health records, laboratory values, and survey responses.
- Willingness to complete periodic patient-reported outcome surveys and symptom tracking assessments.
You will not qualify if you...
- Individuals under 18 years of age.
- Inability to provide informed consent directly or through a legally authorized representative.
- Currently enrolled in an interventional clinical trial that would interfere with participation in this observational registry.
- Any condition that would make participation infeasible or unsafe according to the study team.
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person or electronic consent)
Duration - At least 5 years, with many participants followed for 10 years or longer
Participants are observed over many years with periodic assessments to track symptoms, treatments, disease progression, and quality of life through patient-reported outcomes and health record data.
PRO surveys every 3 to 6 months, health data collected every 6 months
Trial Site Locations
Total: 2 locations
1
MPN Research Foundation
Chicago, Illinois, United States, 60654
Actively Recruiting
2
Memorial Sloan Kettering Cancer Center
New York, New York, United States, 10065
Actively Recruiting
Research Team
S
Stephanie Scobey, MPN, BS, RN
S
Sara Douglas, MSN, RN, OCN
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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