ASCIA Inborn Errors of Immunity Clinical Care Standard

Le résumé fourni par la source

Introduction Inborn errors of immunity (IEIs) include primary immunodeficiencies (PID) and are a group of more than 550 potentially serious chronic medical conditions. They are caused by defects in genes that control the immune system and can lead to frequent or severe infections and other chronic immunological conditions, including autoimmune problems. The ASCIA IEI/PID Clinical Care Standard was developed in 2024, as part of the ASCIA Immunodeficiency Strategy (the Strategy), to improve the diagnosis and management of children and adults in Australia and New Zealand with these conditions. Method Since 2019, ASCIA has collaborated with patient/carer organisations and other stakeholders to develop the Strategy at a national level for both Australia and New Zealand. The Strategy was launched virtually in April 2022. This was followed by an in-person implementation meeting in April 2023, where several priorities were identified, including development of an ASCIA IEI/PID Clinical Care Standard. At an ASCIA IEI/PID Resources working party meeting in May 2024, a draft standard was developed, based on expert consensus. This was then reviewed by the ASCIA Immunodeficiency Committee and other stakeholders and finalised in August 2024. It was updated in May 2025 to reflect the increase in IEI to over 550 conditions. Results The ASCIA IEI/PID Clinical Care Standard is available open access on the ASCIA website and is relevant to goals 2, 3, 4, 5, and 8 of the Strategy. The guiding principles include high-quality and team-cased care, and there are 8 specific areas of care where improvements should lead to better health outcomes and improved quality of life. Conclusion The ASCIA IEI/PID Clinical Care Standard describes the care that people can expect to be offered for IEI/PID in Australia and New Zealand to improve health outcomes. It also provides an advocacy tool for use by health professionals, patients, and their families/carers.

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