`

Strategic Plan

ARI was established with the following long term goals:

  1. To establish a widely accepted list of diseases that are most likely caused by autoimmunity.

  2. To speed the diagnosis these diseases so that individuals do not suffer for years without a proper diagnosis and proper treatment.

  3. To help determine whether the suspected connection among these diseases actually exists and, if so, to foster research on the underlying causes of all these diseases.

  4. To establish the prevalence of these diseases in the United States and worldwide so that the true burden of this class of disease is understood.

  5. To become the national registry for these diseases and serve the same function for autoimmune disease that the National Cancer Registry serves for the cancer community.

ARI will use patient data to help patients find resources and organizations that can help them with their conditions, including regional and national patient support groups, advocacy organizations, and medical centers focused on specific diseases.

ARI will help find opportunities for patients to participate in research, including research at academic medical centers and research sponsored by private companies such as biotechnology and pharmaceutical companies.

ARI will help patients find others with their conditions with whom they can exchange experiences. This exchange will take place in an anonymized setting where patients can maintain their privacy.

Programs

ARI achieves its goals through its 4 major programs:

  1. The Patient Recruiting Network (PRN) Program: Patient Advocacy Groups (PAGs) that represent one or more autoimmune diseases participate in our Patient Recruiting Network program. Each PAG collects data from patients, and we help the PAG use that data to recruit patients for clinical trials. We also add our own data to help with their recruiting efforts.

  2. The Common Autoimmune Registry (CAR) Program: This is our central database, managed by ARI, that contains identified data supplied by patients directly to the Autoimmune Registry, that may be shared with Patient Advocacy Groups (PAGs). We have enrolled about 500 patients as of November 2018.

  3. The AR Explorer (AREx): A central database, managed by the AR, that contains de-identified data supplied by patients directly to the AR, that is shared with the Patient Advocacy Group that serves as custodian for the patient identifiers (PAGs).

  4. The Autoimmune Prevalence Project (APP) Program: ARI is working with Academic Medical Centers to conduct the Autoimmune Prevalence Project. The Prevalence Project will use anonymized electronic health records to compute prevalence statistics for every autoimmune condition, compute rates of comorbidity, and help us understand who gets autoimmune disease.