Asthma Patient-Powered Research Network (APPRN) Registry

Icon of a laptop displaying a data dashboard, featuring a pie chart and line graph, inside a blue circle.

The Asthma Registry was a project to create a database of people with asthma living in the United States. The goal was to collect information about their asthma, such as:

  • Symptoms they experience
  • When they were diagnosed with asthma
  • Their medical history
  • How asthma affects their daily life
  • Personal details like their age and gender
A diverse group of people standing together, featuring various ages, genders, and ethnicities. One person is seated in a wheelchair, and others hold devices like tablets and smartphones. They are dressed in casual and business attire.

This database was made so researchers could study asthma and find ways to better help people living with this condition. The information in the registry came from surveys that people with asthma filled out.

Baseline and yearly follow-up surveys were done to learn about people’s asthma. The surveys asked about things like:

  • Asthma symptoms
  • Asthma diagnosis
  • Medical history
  • How asthma affects quality of life
  • Demographics (like age, gender, etc.)

The data from these surveys has been analyzed. A full report will be available soon. This is an early version of the report.

A bar chart shows the race of participants: 55% Non-Hispanic White, 20% Non-Hispanic Black, 8% Hispanic, 2% American Indian/Alaskan native, 2% multiracial (not Hispanic), 2% other, 13% unknown.
Infographic showing age distribution: 18–34 years—22%, 35–50 years—34%, 51–60 years—23%, 61–75 years—21%, 75+ years—2%. Includes a female icon. Total N=190 (4 did not respond).
A blue silhouette of a head above text stating "16 years: Median age of diagnosis among participants who responded to this question.
Pie chart showing gender distribution: 66% females, 21% males, 13% unknown, with icons representing each group. Total sample size is 194.

Demographics

The Asthma Registry had more women (66%) than men (21%) participate

  • Most of the people with asthma in the registry were:
    • White (55%), followed by Black (20%)
    • Between 35-50 years old.
    • Most people with asthma were diagnosed with asthma at 16 years old.
    • The top 5 states where people in the registry lived were:
      • California
      • Texas
      • Illinois
      • Florida
      • New York
      • Pennsylvania
Map of the United States with each state shaded in blue or gray and labeled with a number, ranging from 1 to 21, representing data distribution across the states.

Geographic residence distribution

The darker the color, the more people with asthma are from that state.

Asthma Control

  • 39% of people had well-controlled asthma
  • 38% of people had poorly controlled asthma
  • 19% of people had not well controlled asthma
  • 4% of people had controlled asthma

Recommendations

Allergy and Asthma Network recommends

  • People with asthma who continue to have symptoms like coughing, wheezing, and waking up at night to learn about our asthma coaching program. 
  • People with asthma from diverse backgrounds participate in studies to learn more Get Involved with Research webpage.