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Your Voice Has Been Heard – National Institutes of Health Survey Results

By Paul Gross, Founder of the Cerebral Palsy Research Network

In April, many of you participated in a survey about medical treatments for your child. The survey was intended to help a group of researchers decide on the most important cerebral palsy treatments to study. The survey garnered more than 1,200 responses and your answers were very important in shaping the study questions.

The study, entitled “Enhancing Surgical Decision Making for Families of Children with Cerebral Palsy: A Practice-Based Evidence Study,” was submitted on July 31, 2015 to the Patient Centered Outcomes Research Institute for funding consideration.

Your feedback indicated that invasive surgeries were the most difficult decisions to make in the treatment of your loved ones. If funded, the study will enroll 2,500 patients that are being considered for surgery affecting their legs.

Study on Invasive Leg Surgery & Options

There are numerous surgical treatments that are offered for the legs and there is no research comparing the outcomes of those types of treatments. Approximately 500 children will not go through any surgery and will receive less invasive medical treatments such as oral baclofen, bracing and/or physical therapy. This group will be the “control” to compare to the surgical treatment group. But, unlike other studies that randomize which treatments are selected, this study will simply observe which choices families make and measure the outcomes that they view as important for their child.

The lead principal investigator of this study is Dr. Richard Stevenson from the University of Virginia. There are 18 hospitals across the United States and Canada that will participate in this study. A more in-depth description of the study aims and participating centers can be found on the study website.

We wanted to thank the Cerebral Palsy Family Network for their participation in this survey.

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