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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 program:

  1. The Patient Recruiting Network (PRN) Program: This will establish a network of Patient Advocacy Groups (PAGs), each of which will represent one or more Autoimmune Illness.  PAGs may collect data from patients, and they may recruit patients for clinical trials.  Independent, anonymized patient databases, each specific to a small set of, that will support recruiting for clinical research. 
     
  2. The Common Autoimmune Registry (CAR) Program: A central database, managed by ARI, that contains identified data supplied by patients directly to the AR, that may be shared with Patient Advocacy Groups (PAGs).
     
  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 Statistical Database (ASD) Program: A data repository with statistics collected from Academic Medical Centers. This database will not contain patient-level data, but it will be used to report statistics on all autoimmune illnesses.