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.

Bar chart titled "Race of Participants" showing percentages for racial categories: Non-Hispanic White 55%, Non-Hispanic Black 20%, Hispanic 8%, American Indian/Alaskan Native 2%, More than one race 2%, Other race 2%, Unknown race 13%.
Survey results displayed in a bar chart show age distribution of respondents: 18-34 years (22%), 35-50 years (34%), 51-60 years (23%), 61-75 years (21%), 75+ years (2%). Total respondents: 190, with 4 not responding. Icon of a person beside the chart.
Silhouette of a person's head with text: "16 years" and "Median age of diagnosis among participants who responded to this question.
Pie chart showing gender distribution: 66% females, 21% males, and 13% unknown. 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
A U.S. map with states shaded in varying shades of blue. Numbers indicating values are placed within each state, ranging from 1 to 21. California shows 21, Texas 15, and Florida 12, with other states displaying various smaller numbers.

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.