Take Part in a Movement
Take Part in a Movement
PSVT Place Registry
Take part in a movement to bring greater understanding to PSVT
A patient registry is a collection of information about people who share the same medical condition. The PSVT Place Registry collects information from those affected by PSVT. Being involved may help you better manage and live with PSVT while allowing you to compare your experience with others. Participation in the PSVT Place Registry is voluntary and currently open to those living in the United States and Canada.
Joining is as easy as filling out a baseline survey. Your information is anonymized and kept private and secure. View our .
As a member of the Registry, future features may include:
to track your experience with PSVT
Comparison of summary data
from all Registry members such as average age, number of episodes, and more
Record of episodes
that you can bring to your next health care visit or share with family and friends to help them understand the reality of living with PSVT
to keep your Registry information up to date that may also include tips for living with PSVT or the latest medical research
WHAT TO EXPECT
Follow these four short steps to join the Registry
Eligibility PrescreenFind out if the Registry is right for you
Informed ConsentAgree to participate; Allow your doctor to share information with the Registry
Baseline SurveyProvide your contact information and enter your medical history
Follow-up SurveysReturn to the Registry to update your medical information after an episode or every 3 months
Be Sure to Have Handy
It may help to have the following information nearby as you fill out the Registry’s baseline survey:
- Contact information for the physician you see for your PSVT
- When you were diagnosed, which could be the approximate month, date, and year or just the year
- Your preferred hospital where you seek PSVT treatment
- A record of your episode(s), for example how many episodes you had since your last report to the Registry, their duration, and how the episode was resolved (optional)
Ready to get started?
Participation is voluntary. The PSVT Place Registry is sponsored by Milestone Pharmaceuticals, an organization devoted to better understanding PSVT, its treatment and impact on people’s lives. Mapi Group , a leading patient-centered research company, manages the Registry.
Summary information gathered from this Registry could be published in scientific journals or presented at scientific meetings, but information about your identity will be protected and will not be shared with scientists, medical professionals, or other members of the registry community.
Questions? Contact Mapi Group at PSVTPlaceRegistry@mapigroup.com, or call 1-855-646-3446.