Study Of Disease Progression And Treatment Of Patients With Polycythemia Vera (PV)

What we are studying

The purpose of this study is to find out more information about people with PV, follow the course of the disease in these people, and find out how the disease and standard medical care affect the daily life of people being treated for PV. The use of healthcare resources (visits to the doctor, visits to the emergency room, visiting nurses, other caregivers, etc.) will also be studied. About 2,000 men and women with a confirmed diagnosis of PV will participate in the study at approximately 200 community healthcare centers (doctors’ offices and clinics) or academic centers (university clinics and hospitals) across the United States. There is also an optional sub-study in which you will be asked to take part. The purpose of the sub-study will be to examine various aspects of the blood of people who have PV to look at the proteins, genetic makeup, and changes that may occur over the period of the study. You will be asked to sign a separate consent form if you agree to take part in the sub-study. You do not have to take part in the sub-study in order to be in this main study; you can be in the main study without taking part in the sub-study. However, you cannot be in the sub-study without participating in the main study.

Who is Eligible

  • Genders:
    • Men
    • Women
  • Races:
    • White
    • African American
    • Asian
    • American Indian or Alaska Native
    • Native Hawaiian or Pacific Islander
    • Other
  • All Ethnicities
  • Ages 18+

Eligibility Criteria

  • Diagnosis of PV
  • Willing and able to provide written informed consent
  • Willing and able to complete patient questionnaires (either alone or with minimal assistance from a caregiver and/or trained site personnel)
  • Under the supervision of a physician for the current care of PV

What is involved

  • Demographic (date of birth
  • Etc.) information collected
  • Provide contact information
  • Asked to call a central coordinating center to sign up with your contact information
  • Complete the questionnaires which will be mailed to you
  • Return the completed questionnaires using a pre-paid envelope. Every three months you will be asked to provide changes to your contact information
  • Including secondary contacts
  • Be asked to complete the questionnaires if you have not completed them within the last three months. If you are participating in the optional sub-study you will have a blood sample(s) collected for the optional sub-study (initially and once each year if you are participating).

Compensation

You will be compensated $15 for each set of questionnaires that you complete.

Contact Information

Study Coordinator
Jennifer MacLean
Email
[email protected]
Phone
-3539
Principal Investigator
Dmitry Berenzon, MD

Disclaimer: The information on this website is for general informational purposes only and SHOULD NOT be relied upon as a substitute for sound professional medical advice, evaluation or care from your physician or other qualified health care provider.