MPN RESEARCH FOUNDATION LAUNCHES STEM CELL TRANS... - MPN Voice

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MPN RESEARCH FOUNDATION LAUNCHES STEM CELL TRANSPLANT TIMING TOOL FOR MPN PATIENTS WITH MF

Mazcd
MazcdAdministrator

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 is available for free on a mobile phone, tablet and PC. Click here mpntransplant.com/ to check it out

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. For more information about the SCT Spectrum Timing Tool click here 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,” 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.”

Click here mpntransplant.com/ to learn more about the SSTT

and to evaluate your risk level TODAY!

5 Replies
oldestnewest

Hey Maz... :-)

Hope all's well in your world...

Thank you for this new article. I have just scanned through & I am finding it a most encouraging result, thus far...

Best wishes

Steve

Mazcd
MazcdAdministrator
in reply to socrates_8

Hi Steve, yes thank you, all good with me, enjoying the wonderful hot summer we are having over here. Hope you are ok. Maz x

Thanks for that Maz. Answered the questions and was actually quite encouraging. Are they assuming that you are already taking ruxolitinib ?

Mazcd
MazcdAdministrator
in reply to mikerodol

I don't know the answer to that I'm afraid, you could contact them directly and ask. Maz

mikerodol
mikerodol
in reply to Mazcd

Thanks for replying. I will try to find out.

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