MPN Research Foundation Launches Stem Cell Transplant Timing Tool for MPN Patients
CHICAGO (PRWEB) July 19, 2018 -- A new tool to improve stem cell transplant outcomes was announced today by the MPN Research Foundation (MPNRF). The SCT Spectrum Transplant Timing tool (SSTT) was created to facilitate communication between myelofibrosis patients and their physicians.
The SSTT is a portable on-line tool based on a clinically validated scale. It provides a color signal in response to information entered by a patient, that indicates a risk level. The tool is designed to generate meaningful dialogue between a patient and their physician about their treatment options.
Along with the color signal, the SSTT indicates median survival times without a stem cell transplant and includes notes and resources to support patient and hematologist transplant discussions. The SCT Spectrum Transplant Timing tool, available free on mobile phone, tablet and PC is here: http://www.mpntransplant.com/
Created by Zhenya Senyak, editor of MPN Forum, and an MF patient, the tool is the collaborative work of a myeloproliferative neoplasm taskforce from around the world. The taskforce is composed of 18 world-renowned distinguished MPN and transplant specialists, patient advocates and SCT patient survivors. (http://www.mpntransplant.com/about/).
“The decision of whether or not to pursue a stem cell transplant is incredibly fraught for any person," says Ruben Mesa, a member of the Taskforce. "Our hope in assisting with this effort is to lend our knowledge and experience to create a guide to assist with patient-doctor communication around this very complicated issue.”
MPN Research Foundation’s interest in sponsoring this project is born of its desire to connect people living with myelofibrosis to the knowledge they need to pursue the therapy that works best for them. “We want people living with myelofibrosis to share this tool with their physician and fellow patients as part of a larger conversation around their treatment plan,” said Michelle Woerhle, Executive Director of MPNRF. A stem cell transplant stands alone as a known cure for myelofibrosis. However, many patients face risks of morbidity and mortality due to factors including advanced age, other illnesses or myelofibrosis which is progressing to leukemia.
The goal of the SSTT is to help patients who are qualified for a transplant become aware of their risk status in a timely manner so they can be proactive in speaking to their doctors. “There is an optimal time to start SCT,” says Senyak, “simply because the odds of success soar in our favor when we start early rather than late in the game. The SCT Spectrum Timing Tool can help inform the timing of that decision.”
About The Myeloproliferative Research Foundation
The MPN Research Foundation is the only organization fully dedicated to funding research into the myeloproliferative neoplasms, a rare group of blood cancers which include polycythemia vera, essential thrombocythemia and myelofibrosis. Founded in 2000 by a group of patients, the focus is to fund high innovation research that can expand our understanding of the MPNs and get us closer to a cure.
The Foundation’s Scientific Advisory Board works with the patient-led board of directors to utilize a rigorous selection process to ensure donations are allocated to the most innovative research projects. To date, the Foundation has awarded twelve million dollars for MPN research. More information may be obtained at http://www.mpnrf.org or by contacting us at [email protected] or 312-683-7243.
MPN Research Foundation remains committed to a portfolio of research funding that includes an annual Request for Proposals for new scientific ideas of how to help patients with PV, ET and MF, as well as strategic research initiatives focused on areas of unmet need that could prove fruitful for improving the quality and/or length of life for MPN patients. You are invited to learn more at http://www.mpnresearchfoundation.org
Michelle Woehrle, MPN Research Foundation, http://www.mpnresearchfoundation.org, +1 773-453-9917, [email protected]
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