Myeloproliferative Neoplasm Quality of Life

~ International Study Group ~

For MPN-QOL Investigators

For MPN Healthcare Providers

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The MPN-QOL International Study Group

 

The Myeloproliferative Neoplasms Quality of Life (MPN-QOL)
International Study Group

BACKGROUND:  The MPNs are currently at a crossroads scientifically with an explosion of new pathogenetic information, a dramatic increase in the number of therapeutic clinical trials, and unprecedented interest from investigators, patients, and industry. Mechanisms and structures for the conduct of international studies outside of the context of therapeutic clinical trials are lacking. The rapid development and validation of MPN specific instruments (MF-SAF and MPN-SAF) of symptomatic burden and quality of life in several languages (English, French, German, Italian, Swedish, Spanish, Dutch, Chinese – Standard) has demonstrated the depth and breadth of international interest in QOL issues for MPN patients.

PROPOSAL: A core group of dedicated MPN investigators (Dr’s Verstovsek, Harrison, Kiladjian, and Mesa) have sought to found an independent group to link investigators interested in MPN patient issues from around the world. Specific plans including but not limited to
•    Validation of the MPN-SAF Diary for tracking symptomatic response in patients on therapy both investigational and standard
•    Validation of MPN-SAF in remaining major international languages
•    To measure and study the impact of MPNs on developing nations and Asian patient populations of which little has been published
•    Development of response criteria for symptomatic response in MPN patients
•    Cooperative studies investigating QOL, and both medicinal and non-medicinal interventions for MPN symptoms and QOL
•    Evaluation of the MPN symptomatic and QOL impact of allogeneic stem cell transplant
•    Investigations into the psychosocial, financial, and societal impact of MPN illnesses upon afflicted patients
•    Evaluate compliance with current MPN patient recommendations and guidelines
•    Estimation of the impact therapies have on QOL in MPN patients and economic analysis (i.e. QALY’s) for appropriate therapies
•    Liaise with MPN patient groups throughout the world
•    Assist or coordinate international population based studies of MPN patients with non-therapeutic goals including epidemiologic and demographic studies.

We hope that you will consider joining us in this important effort. We envision this being primarily a “virtual group” coordinating by internet, eventually a shared website, shared authorship based on participation, and occasional meetings when gathered in one location (i.e. ASH or EHA). Many thanks for your attention.

Ruben A. Mesa, MD
CONSULTANT HEMATOLOGIST
Chair, Division of Hematology & Medical Oncology
Professor of Medicine
Mayo Clinic
13400 E. Shea BLVD
Scottsdale, AZ 85259
P: (480)-301-8335
F: (480)-301-4675
mesa.ruben@mayo.edu

Last Updated Saturday, September 23, 2017 - 12:37 AM.