Eric Chen

Project Personnel, Autoimmune Registry

1 active project

ARI Workspace

The goal of our research is to determine prevalence of autoimmune diseases, individually and as a class of disease, in the US. This work will help understand the likelihood of having autoimmune disease and we hope it will improve the…

Scientific Questions Being Studied

The goal of our research is to determine prevalence of autoimmune diseases, individually and as a class of disease, in the US. This work will help understand the likelihood of having autoimmune disease and we hope it will improve the ability of doctors to diagnose patients as it will establish the prior probability of having one of these many diseases.

Project Purpose(s)

  • Disease Focused Research (Autoimmune diseases)

Scientific Approaches

We will create three data sets for analysis:

1. A list of diseases rated in the following ways:

a. Evidence Class
i. Strong evidence it is autoimmune
ii. Moderate evidence it is autoimmune
iii. Weak evidence for autoimmunity
iv. A comorbidity of autoimmune disease
v. Symptom or symptom set with no known mechanism

b. Autoinflammatory versus autoimmune flag

c. “Not always autoimmune” flag – to indicate diseases that could have alternative mechanisms of cause

2. A list of patients, anonymized, with socioeconomic, geographic and other data that would be of interest to patients and public health officials to understand which communities are affected by these diseases
3. Outcomes data for patients over time assessing quality of life using PROMIS metrics

Anticipated Findings

The current NIH estimate of 23.5 million people with autoimmune disease was a guess by a knowledgable clinician, but has no scientific support. As a consequence, there are numerous figures in the public sphere and nobody knows which one is correct.

Many reports say autoimmune diseases are on the increase, but since the number is unknown, it is impossible to say whether this is a public health issue or not. Having a methodology that can be used to recompute the number of people with autoimmune disease will help us understand if these reports are true.

Demographic Categories of Interest

This study will not center on underrepresented populations.

Data Set Used

Registered Tier

Research Team

Owner:

Collaborators:

  • Priya Padathula - Project Personnel, Autoimmune Registry
  • Darrison Haftarczyk - Research Assistant, Autoimmune Registry
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