Participate in Research
Here is a list of surveys and studies beyond clinical drug trials looking for input from people living with Essential Thrombocythemia, Myelofibrosis and Polycythemia Vera. We list these as a service to patients who may want to be involved in informing the research process. This is not an endorsement of any of the surveys or companies listed below.
Gilead is sponsoring a research project which is currently seeking participants for a study about experience with MPN symptoms. Do you experience symptoms of MPN? Are you 18 years old or older? Are you willing to be interviewed in person about your experience with MPN? If so, you may be eligible to participate in this study. Participants will receive compensation for their time. The study meeting will take approximately 2 hours of your time. For more information about this study, please call 1-800-762-8138 and leave your contact details for Hafiz Oko-osi.
A 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 study and inclusion and exclusion criteria for ET research study.
Mayo Clinic Scottsdale & Arizona State University School of Nutrition are partnering to learn about yoga in relation to the myeloproliferative neoplasms. This is a web-based study. Please click here for a description of this program and further details.
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 contact Farrah Pompilus or Nate Cahill at Adelphi Values at 617â€720â€0001 or firstname.lastname@example.org email@example.com.
REVEAL study for Polycythemia Vera: An Observational Study of Patients Receiving Usual Care for Polycythemia Vera, sponsored by Incyte Corporation. Incyte is partnering with approximately 200 community and academic medical centers to conduct the study in the U.S. REVEAL, which recently began enrolling patients, is expected to include 2,000 patients under the supervision of a physician for the active management of PV for a period of three years. Click here to learn more or participate.
Cancer Consultants is looking for individuals with polycythemia vera (PV) or myelofibrosis (MF) that are willing to take an on line market research survey sponsored by Incyte about their treatment experience and provide insight about current and future treatments. The information gained from these research studies will be used to improve patient support and treatment strategies. Specifically we are looking for Individuals with PV who are over 18 years of age, live in the US and have been treated with either Hydrea or phlebotomy or those with MF who have already received treatment with a JAK inhibitor.
The survey will take approximately 20 minutes to complete. Qualified individuals who complete the survey will receive a $50 stipend for their time and insight. To learn more please email the study coordinator Dr. Charles Weaver by contacting firstname.lastname@example.org to express your interest.