myMPN Research Updates

Published works from myMPN Research

Creation and Validation of the "myMPN" Prospective Patient Registry of Myeloproliferative Neoplasm Patients  

Abstract Presented: 2018 ASCO Annual Meeting, June 1-5, 2018
Background:The myeloproliferative neoplasms (MPNs) are a rare hematologic malignancy with significant symptom burden. Disease-related registries can be a useful and important tool for rare disease research and surveillance. 
Conclusions: An MPN patient registry has the capabilities of addressing key critical questions regarding MPN patient symptom and treatment needs. Its dynamic nature allows researchers and patient advocates to prospectively connect with individual patients regarding additional information and unmet needs in this rare population.


The "myMPN" Patient Registry: Validation of a Prospective Myeloproliferative Neoplasm Patient Registry

Abstract Presented: 23rd EHA Congress, June 16, 2018
Background: The myeloproliferative neoplasms (MPNs) are an uncommon hematologic malignancy that affects approximately 350,000 individuals in the United States (Blood. 2012;120(21)A2834). The disease course can be complicated for patients, including severe disease related symptom burden, thrombosis, bleeding, multimodal treatment plans, and risk of disease progression (Blood. 2017 Feb 9; 129(6): 680–92). Disease-related patient registries can be a useful and important tool for rare disease research and surveillance.
Conclusion: An MPN patient registry has the capabilities of addressing key critical questions regarding MPN patient symptom and treatment needs. Its dynamic nature allows researchers and patient advocates to prospectively connect with individual patients regarding additional information and unmet needs in this rare population. At this time, registration is only available to individuals in the United States, although ongoing efforts are planned to recruit English-speaking MPN patients from the United Kingdom, Australia, New Zealand, and Canada. Further efforts in regards to grow patient registry enrollment and disease questionnaires are ongoing. 

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