Autoimmune Registry Releases Comprehensive US List of These Diseases
The nonprofit Autoimmune Registry (ARI) has published its first comprehensive list of autoimmune diseases, with information addressing more than 150 disorders, their subtypes, and prevalence in the U.S.
This list was created in part to provide patients and scientists easy access to the latest peer-reviewed research, information on clinical trials, and patient groups for autoimmune diseases.
“I have long hoped that a national registry of autoimmune diseases would be established so that we can examine changes over time, define geographic hotspots, and eventually understand what is causing them,” Frederick Miller, MD, PhD, one of ARI’s scientific advisers, said in a press release.
“This list of diseases provides peer-reviewed prevalence statistics that can help patients, researchers, and doctors understand the impact these diseases have,” added Miller, who is also the deputy chief of the clinical research branch at the National Institute of Environmental Health Sciences, part of the National Institutes of Health.
An autoimmune disease occurs when a person’s immune system wrongly recognizes the body’s own cells or molecules as foreign, promoting immune attacks against them that ultimately lead to cellular and tissue damage.
While the causes behind autoimmune diseases remain largely unclear, most seem to result from a combination of genetic predisposition and environmental and lifestyle factors.
An estimated 15 to 30 million people in the U.S. have such a disease, most often affecting women between 20 and 40 years old. This makes autoimmune disease the country’s largest class of illness, larger than that of cancer, which affects about 15.8 million people in the U.S., according to the National Cancer Registry.
ARI, founded in 2016, is a nonprofit corporation that aims to create a hub for research, statistics, and patient data on all autoimmune diseases.
In compiling the list, more than 150 diseases were found to be “under the ‘autoimmune’ umbrella,” said Aaron Abend, ARI’s executive director, including “many rare diseases, and some diseases only suspected of being autoimmune.”
ARI updates the list regularly based on its own research and feedback from scientists. “Suspected” autoimmune diseases are included on the list until proven to be otherwise.
“We believe this list helps people understand the commonalities among these diseases and can accelerate advances in prevention, diagnosis, and treatment,” Abend added.
Diseases on the ARI list can be searched by name, or filtered by level of evidence of its autoimmune nature, category (the main organ or system it affects), or U.S. prevalence.
Of note, the list also provides total numbers of U.S. cases for each disorder, but the site notes that the total number of cases is higher than the actual number of autoimmune disease patients, due to potential case duplication involving people with more than one such condition.
According to the list, multiple sclerosis is considered to have strong evidence of its autoimmune nature, and a U.S. prevalence of 0.24% (meaning it affects about 5 in every 1,000 people). The list also estimated that 758,000 to 763,000 people in the country have the disease.
People with autoimmune diseases can enroll in the Autoimmune Registry, which provides participants with news on the latest research, treatments, and clinical trials for their disease, while maintaining the privacy of their data.
ARI’s site also contains a section called diagnostic journeys, which shares patient stories to illustrate how long the path to a correct diagnosis of an autoimmune disease can be, and how more than one of these diseases are often found in a person.