201 Study for patients with Myelofibrosis
The purpose of this study is to evaluate the safety, tolerability, and efficacy of the combination of INCB050465 and Ruxolitinib in subjects with myelofibrosis. To obtain further study eligibility details and locate a clinical research site that is participating in this study, please call the Incyte Corporation Call Center [Phone: (855) 463‐3463] or review the additional study information on clinicaltrials.gov
Greetings to our myeloproliferative neoplasm (MPN) patients and dear friends! We would like to tell you a little about one of our new research projects and invite you to participate. Patients with types of MPNs including essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF) such as you often experience severe symptom burden including fatigue, abdominal complaints, nausea, weight loss, and constipation. Growing evidence indicates that there are alternatives to traditional pharmacologic therapy that may help to improve these symptoms. To date no research endeavors have investigated the impact that different foods may have in MPN patients.
This research project, entitled the NUTRIENT Trial (NUTRitional Intervention among myEloproliferative Neoplasms Trial), is designed to evaluate how changes in nutrition can help control MPN disease-related symptom burden. In this first part of our study, we have created a survey to help us understand the dietary needs, habits, and preferences of individuals with MPNs. The link to the survey can be found at:
We ask that you consider partnering with us to improve our understanding of nutrition in individuals with MPNs by completing this survey. We ultimately plan to use this information to develop a nutritional intervention to see if we can change how you feel.
This survey will take an average of 10-15 minutes to complete, although some people make take longer. We do not ask for any sensitive or personal information in this survey, but we do ask about features associated with your MPN disease, what symptoms you are experiencing, your dietary habits and preferences, what supplements you may use, and what dietary needs may not be met (such as weight loss).
We thank you for your time and commitment to improving the lives of MPN patients around the world.
Robyn Scherber MD, Angela Fleischman, MD,PhD & Ruben Mesa, MD
QuintilesIMS Global Services is conducting a study 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.
We are looking for ET patients with the following criteria:
- Patient is ≥18 years of age
Patient has a current diagnosis of Essential Thrombocythemia (ET) and fulfills one of the following:
- Patient has received hydroxyurea treatment in the past and discontinued it for any reason OR
- Patient could not receive hydroxyurea because it was contraindicated for the patient
- Patient has some self‐reported disease related symptom burden
- Patient is physically and mentally able to participate in an 75 minute interview in English to discuss signs, symptoms, and impacts related to ET
- Patient is not currently participating in a research study where an investigational agent is being administered
- Patient has no prior treatment with any oral JAK inhibitor
Next Online MPN Yoga Study
Your Help is Needed
The results of this second phase will provide the data needed to submit a large effectiveness trial to the National Institutes of Health, National Cancer Institute. This will be a partnership between Mayo Clinic, ASU, and Udaya in the hopes of providing a non pharmacological complementary approach to symptom management in MPN patients. This study is supported by philanthropic funds from an MPN patient, and is not linked to any pharmaceutical company or drug.
Click here for more information
Survey of Integrative Medicine in Myeloprolifertive Neoplasms
Drs. Ruben Mesa and Krisstina Gowin, Mayo Clinic AZ
To complete and submit click on this link:
MPN Landmark Study Findings
In March 2016 our MPN Education Foundation represented by David Alexander and Antje Hjerpe met with our MPN coalition members: CancerCare, Cancer Support Community, Leukemia&Lymphoma Society, NORD, MPN Advocacy & Education and MPN Research Foundation in Scottsdale, Arizona to discuss the findings revealed in the Landmark Survey comprised of 207 MF, 380 PV and 226 ET patients. Further updates to follow soon.