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Decision Support Tool for Pediatric Neuromuscular Scoliosis

This study is testing a new "decision support tool" to help patients, parents, and doctors make choices about surgery for neuromuscular scoliosis (NMS). NMS is a curve in the spine that happens in children with certain medical conditions. The tool is designed to help families and doctors have better conversations about treatment options, especially when there isn't one clear "best" choice. You might be able to join if you are a parent and your child is between 8 and 21 years old, has NMS, and speaks English or Spanish. Your child should also be coming to a pediatric orthopedic surgery clinic to talk about possible NMS surgery. The study aims to see if the tool helps families make decisions and if it's easy to use. The study is currently unclear about its status and plans to include 110 participants.

Study design
This study is an interventional pilot trial. Participants will either receive usual care or use the decision support tool.
What's involved
Not specified in the trial record.
Compensation
Not stated in the trial record.
Follow-up
The primary endpoint, intention for NMS treatment, is measured immediately after a clinic visit. Further follow-up is not specified.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT07167927

Developing an Innovative Decision Support Tool for Pediatric Neuromuscular Scoliosis

Recruiting
NAAges 8+InterventionalHealth services
University of Utah
~110 participants
Updated 2026-08-10 on ClinicalTrials.gov
What's tested:Decision support tool

At a glance

Recruiting sites
2 of 2 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Intention for NMS treatment
Measured over Immediately after clinic visit

Conditions

Children With Medical Complexity (CMC)
Multiple Chronic Conditions
Neuromuscular Scoliosis
Shared Decision Making
Decision Support Systems, Clinical
Decision Aids

Explore related trials

Children With Medical ComplexityNeuromuscular scoliosis

Where it's being run

2 sites across 2 states
California1
Utah1

Study leadership

  • Jody Lin, MD, MS · PRINCIPAL_INVESTIGATOR · University of Utah

Who to contact

Angela Zhu, BS
[email protected]
801-662-3675
Email the study team

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Do you actually qualify for this trial?

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Eligibility criteria

Inclusion

Parent-child dyads of children with neuromuscular scoliosis who speak English and Spanish.
Child is between ages 8-21 years of age and they are coming into the pediatric orthopaedic surgery clinic for consultation about potential surgery for NMS.
NMS is defined as having neurologic impairment (NI) and scoliosis using relevant ICD-9 or ICD-10 codes from Feudtner, et al. 2014 or Berry, et al. 2012. or a qualifying diagnosis per the Pediatric Spine Study Group definition of NMS.
All pediatric orthopaedic surgeons and neurosurgeons who treat neuromuscular scoliosis at our study sites will be eligible participants.

Exclusion

Families whose child with NMS is less than 8 years of age at time of orthopaedic consultation because surgery at a younger age usually indicates an atypical case.
Children with the diagnosis of Becker's muscular dystrophy due to potential disease modifying therapies that may alter curve progression.

What this trial measures

  • Intention for NMS treatmentImmediately after clinic visit

    Parent degree of decision preference (1: no surgery-9: surgery)