Celiac Disease Foundation is pleased to announce our participation in the Autoimmune Research Network, known as ARNet. ARNet is a network of autoimmune disease advocacy organizations that will foster research into celiac disease and related autoimmune conditions. In consonance with CDF’s Strategic Plan to increase national awareness of the ramifications of undiagnosed celiac disease, the first goal of ARNet is to reduce the time it takes to diagnose participating autoimmune diseases.
Researchers will be able to use ARNet to find out how many people are qualified to participate in their medical research projects. Medical research project participation is strictly voluntary and you may opt out of ARNet participation.
ARNet will be supported by grants from the American Autoimmune Related Diseases Association (AARDA), which will allow CDF to participate at no cost to our organization or to our community. We are grateful to AARDA and the National Coalition of Autoimmune Patient Groups (of which CDF is a member) for providing us with the opportunity to collaborate with other disease advocacy organizations. We believe our understanding of autoimmune conditions such as celiac disease will greatly improve as a result of this effort.
How ARNet Works
CDF will make “blinded” data collected through our website available to researchers through ARNet. “Blinded” data means we remove all identifying information such as your name, address, email, phone and any other data that can directly identify you.
We include information that would help determine whether you would be eligible for participation in research, including your age, gender, years with disease, symptoms, etc.
The information we provide is used by researchers to identify eligible participants for research studies.
If you are eligible for a research study, CDF will be notified through ARNet. We will contact you via email to let you know about the researcher and the research. You may then decide if you would like to participate. The researcher will never contact you directly
If you decide to contact the researcher, that researcher will collect additional data from you to determine if you are eligible to participate in the research. At no point are you required to participate or to provide additional data. Even if you decide to contact the researcher, you can decide not to provide your data.