All patients who have ever had a diagnosis of essential thrombocythemia (ET), polycythemia vera (PV), myelofibrosis (MF), or other rare MPNs, are 18 and older, and live in the United States, are encouraged to enroll in the MPN PROGRESSion Registry.

Participants must have a confirmed diagnosis of pre fibrotic primary myelofibrosis (pre-pMF), primary myelofibrosis (MF/pMF), secondary myelofibrosis (sMF), polycythemia vera (PV), essential thrombocythemia (ET), MPN-unclassifiable (MPN-U), MPN-accelerated phase (MPN-AP), or MPN blast phase (MPN-BP) per WHO 2022 criteria.

Each unique patient journey provides invaluable insights that can drive research and improve care. Patients from diverse backgrounds, locations, and care settings are encouraged to participate, as their involvement enriches the dataset and strengthens the research outcomes. By sharing your health data over time, you become part of the solution.

Patients enroll online, provide permission to share their electronic medical records (EMR), and designate their care center(s). The secure MPN PROGRESSion Registry platform automatically and securely pulls records in. Patients can log in and answer regular surveys about their health and symptoms to supply additional information about their MPN journey. More types of data will be added to the MPN PROGRESSion Registry over time. Once enough data has been collected to meet requirements for statistical significance, it will be shared only with pre-screened, trusted research projects.

All data is stored securely and used solely for approved research purposes. Any and all data shared with researchers will be de-identified and anonymous — all personal patient information such as name, age and location is removed.

At this time, only patients living in the U.S. are eligible to participate. This limitation ensures we meet U.S.-based regulatory requirements, data privacy laws, and research compliance standards. We hope to be able to open the Registry to individuals outside the U.S. in the future.

Yes — many patients who are in clinical trials can also join the MPN PROGRESSion Registry®. Being in a clinical trial does not automatically exclude you from participating. However, some trials may have restrictions, so it’s a good idea to check with your clinical trial team before enrolling in the Registry.

If you’re unsure, you can also reach out to the Registry support team for help.

You will be asked to sign up as an MPN PROGRESSion Registry® participant through a simple, secure online portal. During enrollment, you’ll provide consent to share your electronic health records and select all of your care centers.

After you enroll, you may see short surveys or modules on your homepage asking about your MPN journey and health experiences. Some surveys will appear every 3 months, while others may be sent every 6 months — depending on the type of information we’re gathering. You’ll receive a notification each time an update is available, and all activities are designed to be quick and easy to complete at your convenience.

Your privacy is always protected: your name and identifying details are separated from your clinical and survey data before any information is shared with researchers.

It’s easy to sign up!

You enroll through a simple, online portal and provide consent to securely share your medical records. You will receive clear instructions and support throughout the enrollment process. Nothing is required from your doctor for you to enroll.

Participants will also receive periodic communications with additional patient activities and surveys to complete, Registry updates, and information on research outcomes to help you understand how your data is contributing to the advancement of MPN and progression understanding.

Ready to get started?

Visit the MPN PROGRESSion Registry® information page at mpnresearchfoundation.org/MPNPROGRESSionRegistry and click the ‘enroll now’ button to complete the simple form. You will then be directed to the secure MPN PROGRESSion Registry portal to complete your registration. Click on “Informed Consent” to review and sign the documents online.

If you have any difficulties with the registration process, email mpnprogressionregistry@mpnrf.org for assistance.

Congratulations on the success of your bone marrow and/or stem cell transplant! We encourage all prior MPN patients to participate by sharing your data and experiences from your MPN journey. Your health history will provide incredibly important insights and understanding on how or why you reached the stage of needing a transplant and even what the post-transplant information can inform.

Yes, patients with MPN-U are eligible to enroll. 

Yes, patients with another cancer in addition to their MPN (for example, ET plus skin cancer) are still eligible to participate. 

If you’ve received care for your MPN at more than one medical center or clinic, we encourage you to share records from all of those locations. This helps give researchers a more complete picture of your health journey, which is especially important for understanding how MPNs progress and how treatments may differ between providers.

In some cases, multiple providers or clinic locations are part of the same health system and are accessed through a single patient portal login (for example, MyChart). If you use the same username and password (credentials) to see all of your providers, connecting your medical record once may allow the Registry to access information from all providers and locations linked to that account.

However, if you’ve received care from different health systems, you will need to connect each account separately — even if those systems use the same electronic medical record platform.

During enrollment, the MPN PROGRESSion Registry® portal will guide you through this step, and you can contact MPN Research Foundation at mpnprogressionregistry@mpnrf.org if you need help listing your care locations.

All patients who have ever had a diagnosis of essential thrombocythemia (ET), polycythemia vera (PV), myelofibrosis (MF), or other rare MPNs*, are 18 or older, and live in the United States, are encouraged to enroll in the MPN PROGRESSion Registry®.

Participants must have a confirmed diagnosis of pre-fibrotic primary myelofibrosis (pre-pMF), primary myelofibrosis (MF/pMF), secondary myelofibrosis (sMF), polycythemia vera (PV), essential thrombocythemia (ET), MPN-unclassifiable (MPN-U), MPN-accelerated phase (MPN-AP), or MPN-blast phase (MPN-BP) per WHO 2022 criteria.

Each unique patient experience provides invaluable insights that can drive research and improve care. Patients from diverse backgrounds, locations, and care settings are encouraged to participate, as their involvement enriches the dataset and strengthens the research outcomes. By sharing your health data over time, you become part of the solution.

If you start seeing a new doctor or begin receiving care at a different hospital or clinic during the study, that’s completely okay. To help keep your information up to date, we encourage you to log in to the MPN PROGRESSion Registry portal and add the new care location.

Even if the new provider uses the same patient portal system (like MyChart), each clinic usually manages its own records separately — so it’s important to list each one.

Keeping your care team list current helps the Registry collect the most complete information possible about your MPN journey. If you’re not sure how to update your care centers, the MPN PROGRESSion Registry support team can help.

The Registry is designed as a research tool, not as a clinical monitoring system. This means that while your information contributes to valuable scientific knowledge, it will not replace medical advice, regular check-ups, or clinical decision-making.

However, participants will have access to their own compiled information within the Registry and can share it with their healthcare team. Any concerning results or patterns should always be discussed directly with your doctor, who knows your full medical history and can provide guidance tailored to your care.

PROGRESS over progression
The data gathered and studied from the MPN PROGRESSion Registry® will help researchers look at MPN disease progression trends over time across thousands of patients. This long-term perspective can help to provide scientists with a wealth of knowledge to better understand progression, improve care, and eventually develop cures for MPNs.

Unique opportunity to contribute to research outcomes
A major focus of the MPN PROGRESSion Registry is determining risk factors for disease progression in patients with MPNs. One long-term aim is that the data collected will be robust enough to assist researchers in not only identifying patients at risk for MPN progression but also aiding in the development of therapies that delay or prevent disease progression.

Your participation provides an exciting and unique opportunity to be a citizen scientist and help contribute to the expansion of scientific knowledge. Sharing your health journey over time is your chance to give back to the MPN community and help advance meaningful research into better care and outcomes.

Your individual journey matters
Your individual journey and unique disease data are a key part of the solution to learning more. Since this is a direct-to-patient Registry, it allows patients, rather than doctors or researchers, to provide information about their MPN experiences. This approach provides a larger, more personal picture of how MPNs impact the lives of patients.

Together, individual drops of data can make an ocean of change. There is power in numbers, and we need everyone eligible to contribute and provide as much data as possible. The more information gathered by the Registry, the more comprehensive, diverse, and statistically significant the data will be — and the more we can learn.

Easy, trusted & secure
Joining is easy and secure. Patients can enroll through a simple, online portal with clear instructions and support throughout the process.

The MPN PROGRESSion Registry can be trusted by patients and researchers:

• It was methodically developed and built over a number of years by MPN Research Foundation and the experts at IQVIA, with oversight from scientific advisors and an Institutional Review Board (IRB).  

• All data is highly secure, HIPAA compliant, and meets the National Institutes of Health (NIH) standards for privacy and confidentiality.  

• No identifying information will ever leave the Registry — only anonymized information (where your name and other identifying personal details are removed from the rest of the data being studied) will be shared with any researchers or biopharmaceutical industry partners.

The power of connected data
With your permission, your electronic medical records (EMR) — including lab results, diagnoses, treatments, and clinic notes — will be securely connected and integrated into the Registry database from the sources that you designate. This is not unlike the process that is followed to securely link sources of financial information (e.g., connecting your bank account with a mortgage company) using a third-party service provider.

In future years, participants may also be able to view summary reports providing insights from across the MPN PROGRESSion Registry population, created using de-identified, aggregate data. These types of reports could include trends in symptoms, treatments, or outcomes among patients with similar MPN types.

Your time commitment is minimal. The MPN PROGRESSion Registry is designed to easily and efficiently collect information. Initial enrollment takes about an hour. After that, most participants spend just 5-10 minutes every few months completing brief surveys or updates.

Yes! As a participant in the MPN PROGRESSion Registry®, you will receive regular updates and reminders to help you stay informed and engaged. These communications may include:

• Updates on Registry news, research progress, and how your participation is making a difference

• Reminders to complete surveys or keep your health data up to date

• Opportunities to engage with researchers or learn about ongoing studies

• Access to your personal Registry portal

Note: Medical records shared with the Registry are not visible in your portal account, but they are securely and anonymously used by pre-approved researchers to better understand MPN progression.

When you join the MPN PROGRESSion Registry®, you will be asked to:

• Share your health information: You will allow the Registry to collect information from your electronic health records over time, as well as data you choose to share directly about your health experiences.

• Provide updates over time: Because this study aims to learn as much as possible about MPN diseases and progression over time, as a participant, you’ll be asked to periodically provide updates about your health. This may involve filling out short questionnaires or contributing new information as your condition changes. Updates will typically be requested every few months but are designed to be time-efficient and fit your schedule.

• Be contacted by researchers about future studies: This could include things like surveys, long-term studies, or clinical trials. MPN Research Foundation will not contact you directly. However, researchers who access de-identified Registry data may request permission to reach out to eligible participants. Taking part in any additional research is always voluntary and would require separate consent.

• Maintain your participation: Your involvement is ongoing but completely voluntary. You can decide to withdraw from the Registry at any time.

• Support research without additional costs: There are no financial costs or obligations tied to your participation. The Registry is funded by MPN Research Foundation, and your contribution is focused on providing data and advancing knowledge and care for MPNs.

As a thank-you for your time and effort as a participant in the MPN PROGRESSion Registry®, you will be eligible for a raffle twice each year. Winners will be selected at random, and participation in the raffle is optional. While compensation is not guaranteed, the raffle offers a small way to recognize and appreciate the valuable contributions you are making as a participant toward advancing MPN research and improving care for the community.

Yes. You may withdraw from the MPN PROGRESSion Registry at any time, and no new data will be collected after you withdraw. Previously collected data may continue to be used for research, unless you specifically request that it be removed, and such removal is permitted by applicable laws and research guidelines.

If you choose to withdraw and want your data removed, you can contact the Registry team to make that request, and we will review it in accordance with applicable requirements.

Your decision to withdraw will not affect your relationship with the Registry, MPN Research Foundation, or your medical care in any way.

No. Your information in the Registry is de-identified before it is used for research. This means that no names, addresses, or personal identifiers are ever shared with researchers. There is no way for insurance companies or other outside entities to trace Registry data back to you as an individual. 

The Registry is fully compliant with privacy protections such as HIPAA, and participation will not impact your insurance coverage.  

Want to help spread the word about the MPN PROGRESSion Registry®? Download shareable information. Contact us to learn more and for additional resources at mpnprogressionregistry@mpnrf.org Share out about the MPN PROGRESSion Registry on your social media. Tell your MPN providers about the MPN PROGRESSion Registry and share the provider toolkit with them at: mpnresearchfoundation.org/registryprovidertoolkit