Autoimmune Research Network – ARNet
First the doctor told me the good news: I was going to have a disease named after me.
People often suffer from more than one autoimmune disease which suggests there are common disease pathways. By creating a common research tool and collaborating with many different autoimmune disease groups, we hope to raise general autoimmune disease awareness and increase clinical research participation.
The patient data/information is collected through an organization. The data is stored and protected by the NCAPG member group where the survey was accessed. If your data shows that you may be qualified for a study, the member group who “houses” your information will contact you directly to provide you with information about the research and how to participate. Your personal information will NEVER be shared without your consent. Only “anonymized” information is shared with potential researchers. For example, "anonymized data" means a researcher would be able to find out how many 34-year-old females have a certain autoimmune disease but NOT the names/contact information of those women. If the researcher wants to contact them, the researcher contacts the group(s) where the survey originated and that group will contact the women to see if they would like to participate.