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Let’s turn progression into progress
The MPN PROGRESSion Registry® is a patient-focused research initiative that collects comprehensive, long-term, myeloproliferative neoplasm (MPN) patient health data.
The goal is to help scientists and clinicians:
Better understand the causes of MPN disease progression
Identify new patient treatments and care strategies
More accurately assess how well treatments are working
Ultimately, find a cure
Already enrolled? Log in.
If you are a patient 18 and older, living in the United States, who has ever been diagnosed with an MPN, you can enroll and contribute information about your patient experiences over time. Participation is easy, secure, requires minimal time commitment — and sharing your data can help impact future MPN research!
What is MPN
Progression?
Myeloproliferative neoplasms (MPNs) are rare blood cancers that include essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF). These MPNs can progress over time into more aggressive forms of the disease, or, more rarely, to secondary acute myeloid leukemia (AML). Progression is a major concern for MPN patients, and a priority area of focus for researchers.
Curious about other research terms? Visit our MPN PROGRESSion Glossary.
How does participation work?
Enroll online, designate your care center & consent to share your electronic medical records — it’s fast and easy
The system automatically, and securely, pulls your records into the study, with more types of data added over time
Log in to your portal to answer regular surveys about your MPN journey & view your records all in one place
Only de-identified, anonymous data is shared with pre-screened, approved MPN research projects and researchers
Are you an MPN patient, over 18, living in the U.S.?
Learn more about the enrollment and informed consent process by watching this helpful video with MPN PROGRESSion Registry® Lead PI, Dr. Raajit Rampal.
How to enroll guides
View or print step-by-step enrollment instructions
About informed consent
Watch our step-by-step video taking you through the MPN PROGRESSion Registry® enrollment process.
You can also download the companion PDF guide.
Want to learn more?
We have many informational Registry resources available for you to download, print, or share.
Benefits of the Registry community
The MPN PROGRESSion Registry is not just a study.
It’s a community.
Patients who join the Registry are not only helping to advance MPN research and care. They also become part of a unique Registry community.
Participants enrolled in the study receive the MPN PROGRESSion Registry® Read Up email newsletter, with study news and updates, each quarter.
Enrolled patients can join MPN PROGRESSion Registry® Meet Ups, held three times a year. These informal online gatherings cover various Registry topics and updates, and optional opportunities to interact with other participants in small breakout rooms.
At this time, only patients living in the United States are eligible to participate.
To ensure we meet US-based regulatory requirements, data privacy laws, and research compliance standards, we are currently limiting enrollment to US residents, 18 or older, who have ever been diagnosed with an MPN. We hope to be able to open the MPN PROGRESSion Registry to additional countries in the future.
Participate in the next generation of MPN research progress.
Together, individual drops of data can make an ocean of change.
Designed to keep your data anonymous & secure
The MPN PROGRESSion Registry system:
Securely stores and protects any health information you share
Meets strict HIPAA medical privacy laws
Meets National Institutes of Health (NIH) standards for privacy & confidentiality
Is reviewed and approved annually by an Institutional Review Board (IRB), an independent, trusted, institutional review and ethics board that ensures research is conducted safely and patients’ rights are protected
Keeps your personal information separate from your health data
None of your identifying information will be used for research — only anonymous data, without your name or personal details, will be shared with carefully approved research teams. Patients own their health records and consent to how they are used.
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Foundation-supported paper on progression published in Leukemia
In September 2020, MPN Research Foundation launched the Progression Research Network (PRN), bringing together a collaborative group of researchers, industry partners, and advocates to address an unmet need: improved scientific understanding of MPN disease progression. They quickly identified the importance of better patient data to support progression research and care, best solved by a long-term MPN registry capable of capturing real-world patient experiences and outcomes data.
From insight to impact:
Developing the MPN PROGRESSion Registry®
Read our collaborative white paper with IQVIA to learn how the vision for the MPN PROGRESSion Registry became a reality.
How do we identify MPN disease progression earlier and more accurately? Authors representing the MPN Progression Research Network (PRN), including MPN PROGRESSion Registry Principal Investigator, Dr. Raajit Rampal, published a new open-access paper in Leukemia, titled ‘Defining and predicting disease progression in myeloproliferative neoplasms: a proposed biomarker-driven approach’
Why studying MPN progression is critical to your care
We still have a lot to learn about how and why MPNs progress.
Existing data is limited, often hard to access, or is missing key details.
Researchers and clinicians still need clear, widely accepted definitions or biomarkers to mark when one MPN subtype evolves to another.
MPN industry and biopharmaceutical partners need better data to help meet your needs as a patient — and to develop better treatment options.
A large collection of MPN data over many years can help researchers better see trends and patterns — which can help aid new discoveries.
MPNs are complex and can be unpredictable. No two patients’ experiences are exactly alike.
Many questions remain about why some patients’ conditions progress rapidly, while others remain stable.
What is patient
‘health data’?
Patient health data can encompass a variety of things. It can include electronic medical records (EMR), which are a patient’s digitally stored medical information over time, information noted in your records by your doctor’s office, clinics or hospitals, as well as information you provide about your health and wellness at any given time. Health data can include details such as diagnoses, test results, medications, vital signs, treatment plans, visit notes, and imaging reports, as well as administrative information like demographics and immunization history.
For the MPN PROGRESSion Registry, the health data collected will come from each participant’s EMR, including demographics, medical history, MPN type, related blood test results, additional information about associated conditions such as heart disease and blood clots, laboratory data for diagnostic tests, and medications. The collected health data will also include information you regularly provide the MPN PROGRESSion Registry via surveys, short answers, and other scored questions, such as the MPN-10.
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Tyler Parsons, PhD
Chair, MPN PROGRESSion Registry Patient Engagement Advisory Council (PEAC), Researcher, Washington University School of Medicine in St. Louis, and PV patient
“The MPN Progression Registry will offer researchers from around theworld access to a robust repository of MPN progression data to ensure pre-clinical modeling of MPN disease remains patient-centric in both scope and design. As both an MPN patient and a scientific researcher, I view this registry as an invaluable tool which will be utilized to direct the next generation of MPN-related scientific discovery.”
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Raajit Rampal, MD, PhD
Hematologist, Memorial Sloan Kettering Cancer Center, Principal Investigator, MPN PROGRESSion Registry®
“Disease progression remains a significant concern for patients and physicians alike. With the launch of the MPN Progression Registry we are taking a major step towards understanding progression, and ultimately how to reduce the risk of it. As both an MPN patient and a scientific researcher, I view this registry as an invaluable tool which will be utilized to direct the next generation of MPN-related scientific discovery.“
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Dr. Janeana White
MPN PROGRESSion Registry Patient Engagement Advisory Council (PEAC)
“You’re going to be part of a community. There’s a community stewardship. You’re going to learn so much, and you're at the cutting edge of helping.
Long-term, I hope we have way more participation, way more engagement, way more knowledge of the diagnoses.”
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Kapila Viges
CEO, MPN Research Foundation
“We have been called to action to understand why every patient’s journey is different. Changing the paradigm of MPNs starts with better characterizing the disease. With a better understanding across the spectrum of ET, PV, and MF, we can drive meaningful progress.”
Frequently asked questions (FAQs)
Your data is part of the solution
Your MPN journey. Your chance to make an impact.
HAVE QUESTIONS OR NEED HELP?
Send us an email or call 773-977-7216, and we will get back to you within two business days to provide assistance.
Thank you to our MPN PROGRESSion Registry® sponsors
Foundational sponsor
MPN PROGRESSion Registry® is a registered trademark of MPN Research Foundation.