The Cerebral Palsy Research Network (CPRN) and the University of Virginia (UVA) have submitted a proposal to conduct a multiyear research study that includes four categories of treatment. This study focuses on children aged 3-12 years who can walk, either independently or with a device. There will be 2,000 children recruited for this study.
Helping Parents and Doctors Find Answers on Therapy and Surgery Options
Children with CP often have stiff muscles that can lead to difficulty walking, abnormalities of tendons, bones and joints, and chronic pain. These problems may interfere with a child’s ability to participate in and enjoy life. There are several treatments or surgeries that can be performed to improve these conditions, but it is difficult to say which is best for a particular child.
“Parents count on their medical team to explain which option will help their child the most. However, the medical community does not have enough data to address parents’ concerns and help them understand what options are best suited for their child. This creates stress for families who are eager to support their child’s development and comfort yet fear putting their child through a procedure that may not be helpful or even worsen their condition,” said Paul Gross, chairman of CPRN.
The goal is to help doctors and parents make better decisions about which children with CP should have which procedures, and at what ages they offer the best outcomes.
CPRN and UVA are seeking funding from the Patient-Centered Outcome Research Institute, a national non-profit, non-government entity. Four categories of treatments will be studied. Doctors will recommend appropriate therapies, but the final decision of which kind of treatment the child will get is up to the parents.
- Orthopedic surgeries, which loosen stiff muscles or adjust the bones in the hips, knees, or ankles.
- Neurosurgical procedure called a selective dorsal rhizotomy that decreases muscle stiffness by stopping overactive signals from the brain by cutting some nerves in the spine.
- Injection of medication into the muscles directly, which temporarily decreases the stiffness.
- Physical therapy, but no other procedure to directly address muscle stiffness.
Study Will Track Child’s Treatments
The study will recruit 2000 children with CP who are receiving these treatments. The details about each child’s medical history will be collected and the child will be followed for 2 years. The information collected will include how parents decide whether to have surgery or not. If they have a surgery, information about it will be collected from the surgeon. Throughout the study, the child’s physical function will be evaluated along with how they are participating as part of a family and community. Achievement of walking-related goals and quality of life are some of the most important outcomes in the study. Parents of children with CP on the study team have played a vital role in helping us understand what outcomes are most meaningful, and have been full partners in the creation and design of the study.