Creation and validation of the “myMPN” prospective patient registry of myeloproliferative neoplasm patients.

Authors

null

Robyn Marie Scherber

Mays Cancer Center, MD Anderson, San Antonio, TX

Robyn Marie Scherber , Lindsey J Whyte , Michelle Woehrle , Amylou C. Dueck , Srdan Verstovsek , Claire Harrison , Ruben A. Mesa

Organizations

Mays Cancer Center, MD Anderson, San Antonio, TX, MPN Research Foundation, Chicago, IL, Mayo Clinic, Scottsdale, AZ, The University of Texas MD Anderson Cancer Center, Houston, TX, N Ireland Cancer Center, Belfast, United Kingdom, UT Health San Antonio Cancer Center, San Antonio, TX

Research Funding

Other Foundation

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. Aims: The MPN research foundation steering committee aimed to create a prospective patient-reported MPN registry to capture demographics, disease related events, and symptom burden. Methods: Using the Genetic Alliance platform, an online registry was created which assessed MPN patients’ baseline demographics and disease history with prospective patient-reported disease events and symptom burden. 50 MPN patients assisted with registry beta testing. Survey registration information was disseminated among multiple MPN-related websites. Results:Accrual: A total of 454 MPN patients initiated the online registry process. Of these, 355 individuals completed introductory demographic and disease information. Respondents were predominantly female (63.7%). Disease-related information: The disease distribution of participants included 45% with essential thrombocythemia, 39% with polycythemia vera, and 12% with myelofibrosis. Most frequent therapies included aspirin (75.5%), hydroxyurea (42.1%), JAK inhibitor (17.6%), or no therapies (9.9%). To date, 436 surveys were logged reporting 902 disease events by 303 users (Table 1). Disease Symptom Burden: At the time of data analysis, 250 participants completed a 418 MPN10 symptom surveys. Mean MPN10 score was 1.9 for ET, 2.3 for PV, and 1.9 for MF. 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.

MyMPN Registry distribution of disease events.

Blood Draw37.3%
Phlebotomy14.2%
Change to MPN Medicine9.6%
Bone Marrow Biopsy6.9%
Transfusion4.8%
Unplanned Hospital Stay4.5%
Outpatient Procedure3.8%
Change in MPN Diagnosis3.3%
Thrombotic or Bleeding Events2.4%
Planned Hospital Stay1.1%
Pregnancy0.2%
Splenectomy0.1%

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Abstract Details

Meeting

2018 ASCO Annual Meeting

Session Type

Publication Only

Session Title

Publication Only: Hematologic Malignancies—Leukemia, Myelodysplastic Syndromes, and Allotransplant

Track

Hematologic Malignancies—Leukemia, Myelodysplastic Syndromes, and Allotransplant

Sub Track

Myeloproliferative Neoplasms (MPN) and Mast Cell Disorders

Citation

J Clin Oncol 36, 2018 (suppl; abstr e19031)

DOI

10.1200/JCO.2018.36.15_suppl.e19031

Abstract #

e19031

Abstract Disclosures

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