National patient registry for organ specific autoimmune diseases - ROAS
The Norwegian registry for organ specific autoimmune diseases (ROAS) was founded in 1996 as a regional registry for Western Norway and gradually increased its scope until reaching full national coverage in 2006. In 2012 ROAS was afforded status as a national quality registry, receiving government funding.
ROAS is a patient registry with a biobank, the registry contains over 1000 patients of which almost 800 with autoimmune Addisons disease. The purpose of the registry is to act as a tool for research, to increase our knowledge of autoimmune disorders, and to participate in establishing optimal routines for treatment and monitoring. Since the start in 1996 over 150 scientific articles have been published using registry data.
ROAS is unique because it is one of the world’s largest and best characterized Addison registry.The primary focus of ROAS is primary adrenal insufficiency (Addison), hypoparathyroidism, and conditions with failure in several hormone-producing organs (polyendochrine failure). One of the largest obstacles for research on these rare diseases has been the lack of large and representative patient material.
Emergencycard for Addison patients. The card informs the doctor on treatment and prevents mistakes and delays in emergency treatment.