Completed MPN Studies and Surveys
MPN Yoga Pilot Study
Mayo Clinic Scottsdale & Arizona State University School of Nutrition partnered to learn about yoga in relation to the symptoms caused by myeloproliferative neoplasms.
Results of the MPN Yoga Pilot Study A total of 48 MPN patients completed the pilot study. Of those that completed, 27 participated in the yoga group and 21 participated in the wait-list control group. The average weekly yoga participation was ~41 min/week, a little less than the 60 min/week that was prescribed. Despite the yoga participation being a little less than anticipated, there were still many significant findings, including the following:
(1) improvements in tumor necrosis factor-alpha (TNF-α) from baseline to week 12 (TNF-α is associated with MPN symptom burden.
(2) Improvements in depression over the course of the study
(3) Improvements in quality of life from baseline to week 12
Future Research The work we describe here will support a grant application to the National Institutes of Health. This grant will secure funding for a large-scale, randomized controlled trial further investigating the effects of online yoga for MPN patient symptom burden and quality of life. Click here to read more about the MPN Yoga Study.
An ET research study by QuintilesIMS (sponsored by Incyte Corporation) to learn which symptoms of ET are the most common, and how these symptoms typically affect the lives of patients who live with the disease. This understanding may help improve how the patient’s experience is accounted for in clinical trials that measure the effect of disease treatments. Please click here for a description of the ET research study.
MPN Advocates Network Annual 2018 Patients Survey - This survey is being conducted by the MPN Advocates Network, a subcommittee of the LePAF (Leukemia Patient Foundation) organization in Bern Switzerland. LePAF is a non-profit organization Patient Advocacy organization dedicated to providing patient groups and patient advocate’s information and tools for advocacy work with the Blood Cancer-specific disease areas.
The purpose of the survey is to determine if there is a population of MPN Patients that are underserved, not having their needs met in their MPN Journey and experience. The information that you have provided is anonymous and will be securely housed by the MPN Advocates Network in London England, and the Canadian MPN Network Patient Advocacy Group in Canada for a period of one (1) year from the time of survey taken. Participation is voluntary and anonymous and the results from this survey will be aggregated and no identity will be disclosed in any form. Click here to learn more about the study.
If you have myelofibrosis (MF), Pfizer wants to hear from you as they build an understanding of the experience of people living with the disease. Pfizer (who has a Phase 2 clinical trial in MF right now) is working with Adelphi Values to conduct paid interviews with patients with MF. The primary goal of these interviews is to obtain feedback on a questionnaire used to assess symptoms of MF. If you want more information please email firstname.lastname@example.org.