Improving Diagnosis of Pediatric POTS and Orthostatic Intolerance

Submitted to: Foundation Grant
Principal Investigator: Dr. Craig Coleby
Co-Investigators:

• Dr. Peter Rowe, Johns Hopkins University

• Dr. Melissa Cortez, University of Utah
  Reviewer: Dr. Phil Fischer, Mayo Clinic
  Research Team: Research Coordinator, Nurse Practitioner Brittany Jorgensen, RN, and Autonomic Testing-Trained Medical Assistant

About the Study

PCARES (Pediatric Care for Autonomic Research, Education, and Solutions) is leading a new research initiative to improve how doctors diagnose Postural Orthostatic Tachycardia Syndrome (POTS) and related disorders in children and teens. These conditions cause symptoms like dizziness, fatigue, and rapid heart rate when standing, often going misdiagnosed or ignored—especially in young girls, who are most commonly affected.

Why This Matters

• POTS and orthostatic intolerance often begin around age 14.

• At least 1 in 100 adolescents are affected.

• Most current testing methods were developed for adults.

• Delayed or inaccurate diagnoses prevent kids from getting the treatment they need to succeed in school and life.

Study Goal

To identify the most accurate, accessible, and cost-effective test for diagnosing POTS and orthostatic intolerance in young patients—especially in everyday medical settings.

What the Study Will Do

Researchers will compare three ways of testing for orthostatic intolerance:

1. Tilt Table Test – A motorized table lifts the patient to a standing angle. Often considered the gold standard but expensive, time-consuming, and not reflective of daily life.

2. Active Standing Test – The patient stands freely without support.

3. Passive Standing Test – The patient stands against a wall with minimal movement.

Each method will be evaluated based on how well it detects symptoms and changes in heart rate and blood pressure.

Who’s Involved

• 100 adolescents with POTS (ages 11–17)

• 100 healthy age- and gender-matched controls

Participants will complete all three tests in random order in a single day, with 20-minute breaks between each.

How Symptoms Are Measured

Two tools will help assess patient experiences:

• Coleby Pediatric POTS Score (CPP Score)
  A symptom checklist (0–100 scale) developed specifically for kids with POTS. A score over 30 indicates likely orthostatic intolerance.

• Functional Disability Inventory (FDI)
  A 15-question survey that measures how much physical symptoms limit daily activities.

Expected Outcomes

• Determine whether cheaper, simpler standing tests are just as effective as the tilt table.

• Improve early diagnosis in primary care clinics.

• Reduce unnecessary delays and misdiagnoses for children and teens.