The Pediatric Spine Foundation Registry for Chest Wall and Spinal Disorders
This study is a registry called The Pediatric Spine Foundation. It collects information on children with chest wall (the bony and cartilaginous cage around the lungs) and spinal disorders. The registry helps spine surgeons track patients and participate in studies. You can join if you are 17 or younger and are being treated at Children's Hospital Colorado Orthopaedic department for a chest wall or spinal disorder. You must have been 11 or younger at your first treatment or evaluation there. The study will look at clinical and X-ray (radiographic) measurements over about 10 years to understand how these conditions progress and are treated. This is an observational study, meaning researchers will collect information without giving new treatments.
- Study design
- This is an observational study designed to enroll 5000 participants. It is a registry, which means it collects information over time.
- What's involved
- The study collects information at each clinical and/or surgical visit you have at Children's Hospital Colorado.
- Compensation
- Not stated in the trial record.
- Follow-up
- Participants will be followed for approximately 10 years, with data recorded at each clinical and/or surgical visit.
AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.
The Pediatric Spine Foundation
At a glance
Conditions
Where it's being run
1 sites across 1 statesStudy leadership
- Sumeet Garg, MD · PRINCIPAL_INVESTIGATOR · Children's Hopsital Colorado
Who to contact
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Do you actually qualify for this trial?
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Inclusion
Exclusion
What this trial measures
- Clinical and radiographic measures for children with chest wall deformity, spine deformity and/or spinal disorder.Approximately 10 years, recording each clinical and/or surgical visit the patient encounters at Children's Hospital Colorado.
The registry records data from clinical and surgical visits - evaluation date, demographics, cobb angle, kyphosis, ambulatory status, ECG and ECHO measurements, lab results (HbG, Serum CO2, Albumin, Prealbumin), X-rays, pulmonary function test and O2 saturation, primary diagnosis, comorbidities, prior and current treatment, surgical info (days in ICU, blood loss, type of procedure, position of device, fusion details), and complication details. An Early Onset Scoliosis 24-Item Questionnaire is also administered each visit. Questions pertain to general health, pain/discomfort, pulmonary function, transfer, physical function, daily living, energy level, emotion, parental impact, financial impact, and satisfaction. For each category there are 1-3 questions where parents can circle one of the five answer choices that vary in severity grade. The primary outcome would be to complete numerous small retrospective cohort studies using the data collected prospectively from the registry.