Background: The MPNs; including the specific diseases of essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF); are chronic, clonal myeloid neoplasms with highly variable characteristics in presentation (risk of vascular events, MPN associated symptoms, elevated blood counts and/or cytopenias, and risk of progression to acute myeloid leukemia). The management of MPNs is a longitudinal process which involves tracking symptoms, medications and associated toxicities, vigilance for possible vascular events, possible need for transfusions, and vigilance for evidence of disease progression. There is an unmet need for tools patients can utilize to track the various parameters of their illness, and for this information to help facilitate dialog and management between patients and their health care team. Currently, a wealth of data remains untapped due to the absence of tools that collect and manage this information on an international scale.

Methods: Leveraging MPN World, a social media platform of over 2000 MPN patients globally, hosted by the GMPNSF (Global MPN Scientific Foundation) patient discussion groups identified the need for a neutral platform (not specific to an institution, specific clinical trial, or hosted by a pharmaceutical company or healthcare system). Based upon feedback on which parameters would be helpful to track longitudinally, the authors (J.H. and N.D.) developed “MPN Journal” which functions as a web based platform housed at . The platform enables patients to self-report data across various parameters linked to specific driver mutations, including age, gender, body weight, height, MPN subtype, and mutation status (covering both driver and somatic mutations with corresponding variant allele frequencies when available). Data collected also encompass medications and their side effects, physical symptoms (based on, but not identical to, the MPN Symptom Assessment Form [MPN-SAF]), psychological symptoms, thrombotic and bleeding events, disease progression to acute leukemia, and non-medicinal interventions such as transfusions, phlebotomy, and stem cell transplantation. For female patients, menstrual and menopausal cycle information is also recorded. Additionally, lifestyle factors including nutrition, physical activity, sleep quality, stress levels, alcohol consumption, and smoking habits are incorporated to provide a comprehensive overview. MPN Journal supports numerous languages in addition to English with validated translations in Dutch, German, Spanish, French, Italian, Portugues, Swedish, Norwegian, Danish and Finnish. Data is housed in a deidentified way and patients log in via an anonymous e-mail address, Additionally, the platform can be leveraged to survey participants in a de-identified manner, with responses correlated to disease parameters such as interest in participation in clinical trials. Users can provide consent for their data to be shared for research purposes and indicate their willingness to be contacted about clinical trial opportunities. Further functionality, including the sharing of aggregate and longitudinal information with healthcare teams, is currently being incorporated.

Results: MPN Journal Launched in April 2025, the platform currently includes up-to-date data on its performance, which will be presented at the ASH Annual Meeting. Within the first two weeks, 387 patients registered for participation. Data to be presented include participant demographics and disease features, satisfaction with platform clarity and usage based on participant feedback, and completion rates. Notably, over 90% of participants have already provided consent for data usage, and more than 80% have expressed willingness to participate in clinical research. Correlative analyses related to disease molecular features, diagnosis, symptom data, medications and dosages, and relevant clinical events are forthcoming.

Conclusions: MPN Journal is a new web-based platform developed by MPN patients for MPN patients to track disease-related parameters. Over time, it aims to (1) increase patients' sense of empowerment in managing their disease, (2) facilitate both patients and healthcare providers in actively identifying and addressing opportunities to improve symptom burden—including raising awareness of potentially relevant clinical trials, and (3) enhance factual communication between patients and their healthcare teams.

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2025
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