MPN Progression Registry® — MPN Research Foundation – Research Foundation funding MPN Research

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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

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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 living in the U.S.?

Join the Registry

Want to learn more?

Printable Resources

Learn more about the enrollment and informed consent process by watching this helpful video with MPN PROGRESSion Registry Lead PI, Dr. Raajit Rampal.

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.

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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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From insight to impact:
Developing the MPN PROGRESSion Registry®

MPN Research Foundation was called to action by the MPN community to meet an unmet need: expanding scientific understanding of MPN disease progression. In response, the Foundation established the Progression Research Network (PRN) in September 2020, bringing together a collaborative cohort of researchers, industry partners, and MPN advocates to address this challenge. The PRN quickly identified the importance of building a long-term patient registry that would capture real-world MPN health data — data that could help researchers answer critical questions about disease progression, enhance care, and improve patient outcomes.

Launching the MPN PROGRESSion Registry required a clear vision and extensive groundwork to address the many challenges inherent in the diverse MPN patient population and in such a large undertaking. Our collaborative MPN Research Foundation and IQVIA white paper details the background and the thoughtful, strategic approach we took to building the MPN PROGRESSion Registry.

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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.

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.”
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.“
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.”