For Patient Advocacy Groups
Autoimmune Registry (AR) partners with Patient Advocacy Groups (PAGs) that focus on specific diseases, and we invite their members to participate.
There are 2 ways for PAGs to participate:
1. Become a Registry Partner by sending your member-patients to our registry and using ARI as your organization's patient registry. You will have the same access to ARI as you would if you built your own registry.
2. Become a Network Partner by allowing ARI to count the patients in your registry as part of our network. Network Partners do not send any personal identifying data to ARI, but Network Partners and their members can participate in clinical research through ARI.
To join ARI, a PAG must adhere to the following guidelines:
The PAG must be a non-profit that serves the needs of patients with one or more autoimmune diseases.
The PAG agrees to notify its members about ARI research opportunities and to contact members eligible for specific studies and to help recruit the patients for research. The PAG will have input into the approval process for research studies. All research will be approved by an Institutional Review Board.
One of ARI’s goals is to find approaches to research that can include those with multiple autoimmune conditions. These individuals, often the sickest, are frequently excluded from research because comorbidities make research more complex. However, we believe that increasing the number of participants is one way we can address this issue. If we don't study those who are sickest, we can't get the help to those most in need.