myMPN Research Updates

Published works from myMPN Research

JAK2V617F And MPL Mutations Are Associated With Worsened Symptom Burden Than CALR In The Myeloproliferative Neoplasms: Findings From the MYMPN Patient Registry

Poster to be Presented: 24th Congress of EHA, June 14th, 2019 from 17:30-19:00
Background:The myeloproliferative neoplasms (MPNs), including essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF) are types of hematologic malignancies accompanied by excessive symptom burden that can contribute to worsened quality of life (Blood 2011). Specific driver mutations (i.e., Jak2V617F, Calreticulin (CalR), myeloproliferative leukemia virus (MPL)) have been associated with disease features, including risk of thrombosis, blood counts and overall survival (Haematologica 2017). However, no studies have yet investigated the role of driver mutations on symptom burden profiles.

Conclusions: This represents the first analysis to identify that genetic mutations may be a contributor to specific symptom phenotypes in MPN populations. The role of symptom etiologies, including thrombotic events, comorbidities, and inflammation, and modifying mutations (i.e., ASXL1), would be ideally investigated in an independently validated database. Although the validity of patient-reported registries may be a caveat to their use, data reported in the myMPN registry mirrors closely with previously published and validated MPN populations.

 

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. 

 

 

PATIENT REGISTRY PROVIDES UNIQUE INSIGHT INTO MYELOPROLIFERATIVE NEOPLASMS

Publication: CURE Today
Author: Jessica Skarzynski

"The MPN Research Foundation (MPNRF)’s myMPN Patient Registry aims to bridge that gap with data from patients themselves – and a new analysis of the registry, presented at the American Association for Cancer Research (AACR)’s annual meeting in Atlanta, has led to some exciting new discoveries, said lead author Robyn M. Scherber, M.D., M.P.H.."

 

 

 

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