Patient participation is the cornerstone of clinical research. ARNet engages with patients through Patient Advocacy Groups (PAG) representing specific autoimmune diseases. Patient data is collected by these organizations through surveys that include common demographic concepts as well as disease-specific symptoms and quality of life metrics. These data are particularly valuable for outcomes research. All patient data in ARNet is anonymized and researchers cannot contact patients directly.
- Patient fills out surveys through disease-specific PAG
- Patient’s data is stored and protected by the PAG that the member belongs to.
- When a patient is qualified for a study, their PAG contacts them and provides each qualifying patient with information about the research and how to participate.
- Patients who choose to participate contact the PAG (or researcher) to learn more about proposed research and how to participate in it.
The ARNet Survey can be found below on RPASF’s exclusive ARNet website. Participation is completely voluntary and there is no cost to you. Please visit the website for further information. Thank you.