Data collected in the MPN PROGRESSion Registry will come from each patient’s electronic medical records (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.

Yes. The MPN PROGRESSion Registry™ is committed to protecting your privacy and ensuring your data is secure.

The system is highly secure, complies with all relevant privacy laws, including HIPAA, and meets all National Institutes of Health (NIH) standards for privacy and confidentiality. It is reviewed and approved annually by an independent, trusted, institutional review and ethics board — an Institutional Review Board (IRB) — that ensures research is conducted safely and protects patient rights. Learn more about the IRB for the MPN PROGRESSion Registry, WCG Clinical.

Your name and other identifying personal information will never be shared with researchers or industry partners — only anonymous information will be be used for approved research purposes.

Participation is completely voluntary, and you may withdraw from the MPN PROGRESSion Registry at any time. If you choose to opt out, no new data will be collected, and you may also request that your previously collected data be removed — where permitted by law and research guidelines.

This approach ensures your information stays protected and gives you control over how your data is used.

To protect your privacy, identifying information — such as your name, date of birth, and contact details — is kept strictly separate from your medical records and survey responses. Only one designated individual, called an Honest Broker, has access to this identifying information to help manage and secure the data.

MPN Research Foundation does not have access to any identifiable patient data. All information shared with the Foundation is fully de-identified and aggregated, meaning your identity is never attached.

The MPN PROGRESSion Registry is managed by IQVIA, a trusted healthcare technology partner, using HIPAA-compliant systems and strict access controls. The entire system is reviewed and overseen by WCG, an independent Institutional Review Board (IRB), to ensure your privacy is protected and your data is used only for approved research.

You do not need to make separate arrangements with your doctors or hospital. When you join the MPN PROGRESsion Registry®, you will be asked to give your consent and securely log in to your electronic medical record (EMR) portal. This process authorizes the transfer of your medical information directly to the Registry.  The Registry does not rely on interagency agreements or require you to separately contact your care team. Instead, it uses your direct permission and secure EMR connections. This ensures that you stay in control of what is shared, while also making the process as simple and seamless as possible.

Researchers will use data collected from the MPN PROGRESSion Registry® for a wide range of MPN-related studies, such as: 

• Symptoms: Changes in fatigue, blood counts, or spleen size

• Common complications and frequency of phlebotomy, transfusion, clotting, and bleeding events

• Treatment outcomes: How different therapies affect progression and quality of life

• Genetic factors: Mutations in genes such as JAK2, CALR, MPL, and others that researchers believe may influence MPN progression

The MPN PROGRESSion Registry® is committed to ensuring participant safety, privacy, and compliance with the highest ethical and scientific standards through the following:

• Central IRB oversight: The MPN PROGRESSion Registry is reviewed and approved by an Institutional Review Board (IRB), an independent, trusted institutional review and ethics board (WCG Clinical) that ensures research is conducted safely, protects patient rights, and maintains privacy while supporting high-quality research

• Ongoing monitoring: The IRB conducts regular reviews to ensure compliance with protocols and address any updates, such as changes to consent forms or procedures

• Data privacy and security: Participant data is de-identified, securely stored, and protected under strict privacy laws, including HIPAA. Access to identifying details is encrypted and limited to authorized personnel

• Registry Steering Committee: A steering committee, made up of independent, scientific advisors and experts, oversees MPN PROGRESSion Registry governance to ensure transparency, ethical integrity, and alignment with regulatory standards

• Patient Engagement Advisory Committee (PEAC): A group of MPN patients, caregivers, and advocates who advise on the design and governance of the MPN PROGRESSion Registry. They ensure patient-facing materials are clear and inclusive, and that patient voices shape engagement, research, and outreach efforts. One PEAC member also serves on the Registry Steering Committee to ensure strong patient representation in decision-making

• Data Access, Use, and Publication Committee (DAUP Committee): A group of experts that helps ensure MPN PROGRESSion Registry data are used safely, ethically, and in line with what participants agreed to when they joined the study. They review requests from researchers who want to use the data and provide advice about privacy, fairness, and scientific quality. The DAUP Committee also helps review research papers and publications that come from the Registry. Final decisions are made by the Registry’s leadership team, using the DAUP Committee’s input and recommendations.

When you join the MPN PROGRESSion Registry, you’ll contribute information in two ways:

1) Your electronic health records (EHR):

• With your permission, the Registry will securely access your health records from your care providers

• This includes things like your diagnosis, blood counts, test results, treatments, and related health history

2) Surveys you complete through the portal:

• You’ll be invited to answer brief questionnaires about your symptoms, quality of life, and MPN experience

• Some will be sent every few months, and you’ll get a notification when they’re ready

You choose what to share. Participation is voluntary, and you can stop at any time. 

Accuracy matters. The more complete your data, the more helpful it is for understanding MPN progression and improving care. 

Your data is private and secure. Everything you share is encrypted, stored in HIPAA-compliant systems, and only used for approved research. 

If your older records have since been scanned into your current electronic medical record (EMR), those can usually be shared with the Registry. However, if your past notes remain only on paper and haven’t been digitized, they cannot be directly uploaded at this time. We know many patients have valuable paper records from decades of care. While the Registry does not yet have a way to accept paper records, we are actively exploring ways to make that possible in the future. Our goal is to capture as much of your MPN history as we can, so stay tuned for updates.