Western Pennsylvania Patient Registry (WPPR)

A Research Registry for Stroke Survivors in Western Pennsylvania

Have you had a stroke? Would you like to help increase what we know about strokes?
Learn about research studies for stroke survivors!

A research registry is a database containing information about people who have similar medical conditions and who are interested in participating in research studies on these medical conditions.
Researchers use research registries to find individuals who might be interested in participating in their research studies.
The Western Pennsylvania Patient Registry (WPPR) is a research registry containing information about stroke survivors who live in Western PA. It does not include any names or other identifying information.
Information placed in WPPR is de-identified. This means that no one can tell who you are from the information available in WPPR.

To enroll, you give written permission for information about your stroke, plus some other non-medical information, to be de-identified and placed in WPPR.
Researchers who want stroke survivors to be in their studies can get permission from the WPPR Coordinator to search through WPPR’s de-identified patient profiles.
If a researcher thinks your profile fits her study, she will contact the WPPR Coordinator, who will then call you to ask if you would like to be contacted by this researcher.
The choice to be contacted by a particular researcher is totally up to you. The choice to participate in any research study is also totally up to you.
Unless you give your permission for others to contact you, you will only ever be contacted by the WPPR Coordinator. She will make sure you are only contacted as often as you’d like.
Even if you are not contacted often about research studies, the WPPR Coordinator will contact you once a year to make sure you are still interested in staying in WPPR, and also to update your information.
You may choose to have your information removed from WPPR at any time.
Participation in WPPR is voluntary, and it is not related to any medical care or insurance.
It does not cost you anything to enroll or keep your information in WPPR. You are not paid to be enrolled in WPPR, but you may be compensated for your participation in research studies.

The main risk associated with WPPR is a breach of privacy. WPPR staff does everything possible to protect your information. We use encryption and password-protection, and we also restrict access to the database. Files containing your contact and other identifiable information are kept in locked cabinets accessible only to the WPPR Coordinator.
There are no direct benefits to you for enrolling in WPPR. However, there may be direct benefits associated with participating in research studies.
Participation in WPPR will ultimately help researchers to better understand how strokes can affect people, to improve the lives of stroke survivors, and to learn more about treatment and prevention of strokes.

Please contact the WPPR Coordinator, Denise Balason,
by e-mail at wppr@pitt.edu or by phone at 412-624-0178.
She is happy to answer any and all of your questions.
Researchers interested in WPPR may get more information from the WPPR research page.