“Your story counts.”
This is what the newly launched Autoimmune Registry (ARI) website states.
This idea is reiterated throughout the site’s content.
But why do autoimmune diseases and the people who have them need to be counted? Isn’t the data already there?
According to ARI officials, researchers still do not have a clear idea of how many people are living with one or more autoimmune conditions.
In fact, the numbers regarding autoimmune prevalence are all over the map, and the disparities can result in delayed or missed diagnoses.
According to ARI, a 501c3-certified nonprofit, the mission is “to create a hub for research, statistics, and patient data on all autoimmune illnesses.”
The website states: “We operate a national database for patients who suffer from any autoimmune disease. Our mission is to reduce the time of diagnosis, support research, compute prevalence statistics, and establish autoimmune disease as a major class of disease so that it receives the awareness of the public, the attention of healthcare providers, and the appropriate funding needed to improve upon existing treatment protocols and disease management strategies.”
ARI also wants to become a go-to resource for information about these conditions.
Why information is needed
Autoimmune illnesses, once considered rare, now appear to be more common, or at least more acknowledged.
It’s estimated that anywhere from 9 million to 50 million people in the United States have an autoimmune disease. Pinpointing the actual prevalence is part of what ARI will try to do.
Diseases like rheumatoid arthritis (RA), lupus, psoriasis, diabetes, Crohn’s, celiac disease, Sjogren’s syndrome, multiple sclerosis (MS), and many others fall under the autoimmune umbrella.
There are between 80 and 140 recognized autoimmune and autoimmune-related diseases.
Some, like lupus and Hashimoto’s disease, have been getting more media attention as of late, due to celebrities like Selena Gomez, Lady Gaga, Nick Cannon, Michael Kuluva, and Gigi Hadid bringing awareness to these diseases.
These celebrities and others who have been properly diagnosed, are lucky. Some people live with autoimmune diseases for years, visiting a half-dozen or more doctors before receiving a proper diagnosis.
Part of this problem may be because inaccurate prevalence reports establish certain autoimmune diseases as rare when they aren’t.
This is one reason why Aaron Abend, the founder and president of ARI, decided to create the registry.
“My mother was misdiagnosed for 10 years because doctors thought Sjogren’s syndrome was a rare disease with only 37,000 cases in the U.S.,” Abend told Healthline. “Today, doctors agree there are probably 3 million cases — not such a rare disease after all. Doctors are taught to favor more common diagnoses over rare diagnoses because generally it is more likely to have a common disease — ‘hoof beats mean horses, not zebras,’ as the saying goes. But if statistics are wrong, then people like my mom suffer.”
How the registry works
The registry is easy to join.
It is free to sign up and consists of a simple survey that people with autoimmune diseases answer.
The information that people provide to ARI remains secure. The data may be used to compile statistics and qualify them for research opportunities, but no identifying information will be shared without permission.
The hope is that the registry can help researchers connect with people and the data.
ARI doesn’t promise it will help cure autoimmune diseases, but people are feeling hopeful that this database may be a good “baby step” on the way to more research and awareness.
“I will sign up for the registry. I don’t mind sharing information about my disease and demographic. If my data could help research or my fellow patients in any way, count me in,” said Pennsylvania resident Laura Burkhold, who has psoriatic arthritis.
Brandy Gatz from Oklahoma was an early participant in ARI.
She told Healthline, “I joined because I have three confirmed autoimmune diseases, and have more suspected. I hope to be able to provide useful information about my diseases that will improve treatments and knowledge.”
The future of ARI
Eventually, ARI will establish relationships and partnerships with patient advocacy groups and disease foundations so that they can share survey data and continue the dialogue about autoimmune diseases.
Their strategic plan details the different components and phases of ARI.
Right now, ARI is new and looking for board members and donations as well as survey participants to join the registry.
As Abend, puts it, “Altogether, the 140 autoimmune diseases could be the most significant health problem in the country. Everyone knows someone with one of these diseases and we believe we can make a difference in the lives of millions of Americans.”