Improving the health of children and adolescents with autoinflammatory diseases (Pro-AID)

Autoinflammatory diseases (AID) are rare, chronic and potentially life-threatening diseases that account for about 10% of diagnoses in pediatric rheumatology. They arise from a dysregulation of the innate immune system and lead to recurrent or persistent inflammation. Due to their rarity, the diagnostic pathway is often lengthy and burdensome, although effective therapies for inflammation control exist once the diagnosis has been made.

 PRO-AID examines the current health care and psychosocial situation of children and adolescents with AID in Germany. The aim is to identify barriers to care, to evaluate the implementation of existing treatment recommendations and to make visible the unmet needs of those affected. Pro-AID focuses on three core areas: the diagnostic pathway, the quality of treatment and the psychosocial situation of patients.

The study is conducted multicenter and prospective and uses the established structures of the National Pediatric Rheumatologic Database (NPRD). Standardized questionnaires are used to collect data on disease activity, therapy, quality of life and health care consumption. Children, adolescents, their parents and treating physicians participate in the data collection.

The results are discussed in focus groups with patients and patient organizations to develop targeted suggestions for improvement. Findings from Pro-AID are to be incorporated into the further development of the treatment recommendations of the Society for Pediatric and Adolescent Rheumatology (GKJR) and may also be relevant for the care of children with other rare diseases.