Site Survey Speaks Volumes About CPRN Study Capacity

As the Cerebral Palsy Research Network (CPRN) prepares its application for the Patient-Centered Outcomes Research Institute (PCORI), we sought very detailed information from our partner Site Principal Investigators (Site PIs) about the children they see and treat in their hospitals. The proposed PCORI application is a study of lower extremity interventions for children with bilateral spasticity (spastic diplegia). We asked each site to review their volume of patients that fit our core “eligibility” criteria for the study — ages two to 12 years and Gross Motor Functional Classification Scale I-III. We asked how many children did they see last year with ambulatory CP that met those criteria. Subsequently, we asked how many of those children received:

  1. gait related neurosurgery surgery specifically selective dorsal rhizotomy (SDR);
  2. gait related orthopedic surgery;
  3. how many had medical treatments such as botulinum toxin (botox) or phenol injections;
  4. and how many only had physical therapy over that 12-month period.

We were gathering these data for planning the study but the results are fascinating unto themselves. Below are a few highlights from the 23 centers participating in this study application. Each of these data points are only for the cohort of patients that are between the ages of two and 12 years and have bilateral spasticity seen in the last year:

  • more than 4,200 of these children were seen in clinic;
  • there were 714 (16.7%) orthopedic surgeries performed to treat them;
  • another 157 (3.7%) had an SDR;
  • approximately 1,500 (35%) were treated with botox or phenol injections;
  • the largest treatment group was physical therapy only with more than 1,800 (43%).

While these numbers are interesting in the aggregate, the practice variation underlying them is quite significant and will be a key part of this study along with the associated patient outcomes. We appreciate the significant work that our study partners have done to contribute to this survey. At the outset of this process, the survey was quite daunting to the Site PIs. CPRN leadership team member, Dr. Ed Hurvitz quipped “I am pleased to tell you that I am currently involved in a major registry project called CPRN.  Once that is moving along and rolling, I will be able to pull out all of the data on the sheet without much effort!  Currently, it is hard to imagine where I get all of those numbers.” This statement speaks to the power of the cerebral palsy registry that CPRN is developing.