A Research Registry for Stroke Survivors in Western Pennsylvania
WPPR is a national resource for neuropsychological research.
Neuropsychology is the study of behavioral changes that occur as a consequence of focal brain injury.
For more than 100 years it has played a central role in research that seeks to understand the mind in
terms of underlying brain structure and function. Despite its importance, the use of neuropsychology
as a research method has been in decline. This decline reflects difficulties associated with participant
recruitment, restrictions on investigator access, and the intensive investment of time and resources that
are needed to acquire behavioral data from brain-injured research participants.
WPPR was established with the goal of creating a research registry of stroke survivors that could
overcome the barriers associated with neuropsychological research. It was launched as a multi-institutional
effort, and envisioned, from the outset, to be a resource at the national level. WPPR procedures for informed
consent and patient privacy protection allow researchers throughout the country to utilize the patient database
for research and participant recruitment.
Since its inception more than eleven years ago, more than 2,500 stroke survivors have been enrolled into the registry,
with approximately 20 new participants joining each month. Most participants are recruited from various
clinical centers located throughout the Western Pennsylvania region, but enrollment is open to qualified
participants located anywhere in the country.
How is WPPR managed ?
The Co-Directors for WPPR are
Julie Fiez and
The daily operations of WPPR are overseen by Denise Balason, the Registry Coordinator (RC).
Technical staff assist with database development and management.
The WPPR database contains, with patients' consent, de-identified profiles offering a complete picture
of available information concerning their brain injury status, demographic information, clinical diagnoses,
basic neuropsychological assessments (when available), and radiologic images. The information is stored
in a MySQL database accessible to researchers through a web-based interface.
Researchers who have decided to use WPPR must have appropriate IRB-approval and they must complete a
formal data use agreement. Once appropriate documentation is in place, the WPPR database can be searched
to identify potential research participants. Once a potential participant has been identified, the Research
Coordinator (RC) contacts the individual, describes the planned research study, and asks whether s/he would
be interested in participating. If the individual consents to being contacted, the RC then provides the
WPPR investigator with the individual's contact information. Scheduling of research participation and signing
informed consent is left to the investigator, with the RC monitoring the contact and success.
How can I learn more?
We invite all interested researchers to contact us to learn more about the WPPR participant pool and its
operational procedures. Initial inquiries should be directed to the WPPR Coordinator, Denise Balason.
She can be reached by e-mail at firstname.lastname@example.org or by phone at 412-624-0178.