MPN Surveys and non-drug intervention studies
The Foundation provides this information to patients for the patient’s benefit and in the hope that these surveys will support research. The Foundation will not endorse any particular study. We have put together guidelines for which studies we will inform our constituents about. Studies must:
- List the name of the study/ survey sponsor
- Be relevant to people living with or caring for someone with PV, ET or MF
- Provide an overview of what information the survey is seeking, who the target audience is, how the information will be used (including how / whether identifying information of respondents is stored) and how the respondent can take the survey (phone, online, in-person)
Myelofibrosis Survey on Jakafi / JAK2 inhibitors sponsored by Pfizer
"If you have myelofibrosis (MF), we want to hear from you! Are you experiencing symptoms due to MF? Have you been treated with Jakafi or another Janus Kinase inhibitor? We would like to hear from you and pay you for a one hour conversation! If you are interested in participating, please contact Adam Mathias or Nate Cahill at Adelphi Values at 617‐720‐0001 or email@example.com for more information."
Longitudinal Study on Polycythemia Vera sponsored by Incyte Corp.
"If you’re living with polycythemia vera (also known as P Vera or PV), consider taking part in an observational study that will help researchers learn more about the disease and the impact of current medical care on the daily life of people with this disease. Call 1-855-738-3259. Polycythemia vera is a rare and progressive blood cancer for which there is no cure. Medical research has increased knowledge of the disease, but significant gaps remain and further study of the disease is underway. For more information on the REVEAL study, call 1-855-REVEAL-9 (1-855-738-3259) or visit clinicaltrials.gov (NCT02252159)."
Market Research Study on Polycythemia Vera or Myelofibrosis sponsored by Incyte
"Cancer Consultants is looking for individuals with polycythemia vera (PV) or myelofibrosis (MF) that are willing to take an on line market research survey 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 clicking this link firstname.lastname@example.org to express your interest."