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Cerebral Palsy (CP) Bladder Management Study

Find out how you can help us learn more about bladder management; what works, what doesn’t, and what makes you happy

Urinary problems like frequent urination and urinary leakage can severely limit the quality of life in adults with Cerebral Palsy (CP). These bladder problems are also common in other nervous system diseases such as spinal cord injury and spina bifida; we call this condition “neurogenic bladder”. Our prior research and clinical experience suggests that neurogenic bladder may not be the most precise term for people with CP. CP differs from the other conditions in that muscle spasticity, communication challenges, and behavioral changes associated with the disease may play just as much a role in bladder function and management as the nervous system damage. Therefore, it would be premature and may be inaccurate to use a neurogenic bladder questionnaires designed for spinal cord injured individuals or individuals living with multiple sclerosis to measure bladder function in CP.

Drs. Sean Elliott and Blayne Welk, both members of the Neurogenic Bladder Research Group (NBRG), have received research funding through a generous grant from the Pedal with Pete foundation, an organization dedicated to advancing research in CP. The organization was founded with the goals of preventing, treating and hopefully curing CP. Pedal with Pete’s founder has always been determined to demonstrate that a handicap doesn’t have to equate to a limitation. Under his leadership, this foundation has raised over $800,000 for CP research and is well on its way to the goal of $1,000,000.

How does the study work?

Once it is determined that an individual meets the study criteria there are just a few steps to take.


Get Enrolled

Participants will spend about 15 minutes over the phone with a research coordinator, answering questions about their past health, medications, surgeries, and bladder management. Participants will also be asked to sign a consent form and a form about health information privacy. Don’t worry; there will be plenty of time to ask questions too!


Get Started

Following the enrollment interview, participants will receive an email that will contain a link to questionnaires about bladder management and quality of life. This site can be accessed via computer, tablet, or smartphone any time, day or night. The questionnaires should only take about 30 minutes to complete.


Follow Up

Two weeks after completing the initial set of questionnaires, participants will receive a second email with a link to additional questionnaires. Upon completion of these questionnaires, participation is complete

Participation in this study is voluntary and participants can withdraw at any time.