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.
Patient Power's Myeloproliferative Neoplasm (MPN) Patient Survey - As researchers around the world seek to accelerate progress in medicine it's important for patients to share their stories to promote greater understanding. To that end, Patient Power has partnered with Dr. Naveen Pemmaraju, an MPN researcher and clinician at The University of Texas MD Anderson Cancer Center in Houston to find out more about how patients use online resources to guide their care. By taking just a few minutes - and with your privacy protected - you can help advance care for yourself and the entire MPN Community. Click HERE to participate!
The MPN Family Study - We know that myeloproliferative neoplasms may occasionally run in families, but what we don’t know is why. The Fleischman Lab, headed by Dr. Angela Fleischman, MD. PhD. in Irvine, CA is seeking to answer that question. Through the MPN Family Study, Dr. Fleischman is working to identify why some families are more likely to get MPN and potentially use that information to develop ways to prevent it.
How does it work, you ask? The study is seeking families that have at least two people with an MPN and/or another blood cancer. You begin with a short online survey of your personal and family medical history, followed by a blood draw at your local lab. It is important that the blood of both the affected and unaffected family members are examined so it can be tested for a variety of mutations.
So, if you belong to a family that meets the criteria above, we encourage you to participate! MPN families are the key to uncovering what predisposes people to develop MPN and with your help, we can unlock these important answers. For more information click here or email firstname.lastname@example.org.
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 and to participate.
Myelofibrosis Patients Journey - This project, sponsored by Celgene Corporation, is available to Myelofibrosis patients who live in the European Union. The purpose of the research is to quantify the emotional and attitudinal MF patient journey across different points in time, focusing specifically on the emotions experienced, any practical impact of the condition and its symptoms, your attitudes towards HCPs and treatments and any information sources you have utilized.
The research will take the form of a 45-minute in-depth telephone interview with web assistance and should you qualify to take part you will be compensated for your time with an honorarium of £50. The research will be conducted in accordance with the MRS Guidelines, BHBIA Legal & Ethical Guidelines, the ABPI Code of Practice and Data Protection Legislation. Click here to learn more about the study and to participate.
Gilead is sponsoring a research project - 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.
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.
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 study and inclusion and exclusion criteria for ET research 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 email@example.com.
Click here to view completed surveys and studies and to learn about the results.