PCC Data Used in Down Syndrome Growth Chart Development

Eighteen PCC practices, so far, have agreed to lend patient data in the development of new growth charts for children with Down Syndrome. The growth parameters and diagnostic data of 106 patients are included in the Vanderbilt University project aimed at creating charts that more accurately represent the growth of Down Syndrome patients today and can be easily integrated into EHR systems.

“PCC has been very instrumental,” said Vanderbilt's Dr. Trent Rosenbloom. “They've helped in our collection of tens of thousands of data points, and we're excited to do something really nice with this.”

In total, the study has collected more than 88,000 data points from 7,876 patients at 12 clinical sites with EHR systems, says Dr. Rosenbloom. A dozen clinical sites, including large medical centers and regional clinics, volunteered data for the project; PCC is the only participating vendor.

While the number of patients in the study is already double the original goal, more data is being sought from patients who are being treated in states west of Mississippi, says Dr. Rosenbloom.

The Vanderbilt growth charts will essentially replace a set of charts that were created nearly 25 years ago and based on data from 750 Down Syndrome patients in four clinical sites in New England. Not only was the original study based on a small patient sampling, the resulting charts were developed before modern advances in treatments for conditions that typically affect patients with Down Syndrome.

Data for the current project has been gathered on gender, weight values, height and head circumference, age at the time of measurement and whether the child has congenital heart disease – a common co-morbid condition in Down Syndrome patients. Collecting data on congenital heart disease will help researchers determine whether the condition alters growth, says Dr. Rosenbloom.

A timeline for completion of the growth charts has not been set, but statisticians have begun a pilot data analysis on what has been gathered so far. It will be at least another year, says Dr. Rosenbloom, before the findings are published and the new charts are available for integration into clinical EHR systems nationwide, including PCC EHR.

The demand for growth charts that function within the context of an EHR – such as those published by the Centers For Disease Control (CDC) – will increase as more EHRs are adopted into clinical practice. The charts for patients with Down Syndrome will be formatted in the same way as the CDC's growth charts.

PCC's Tim Proctor has lead the Winooski, VT, company's effort to gather patient data from its practices that use PCC EHR. Data on Down Syndrome patients ages 0-20 has been gathered remotely from practice servers. Proctor recently send out another round of requests for data from PCC practices.

PCC's position as an EHR vendor for pediatric practices nationwide makes it an ideal collaborator for the project, says Dr. Rosenbloom.