Affiliations 

  • 1 International Patient Organisation for Primary Immunodeficiencies (IPOPI), Brussels, Belgium
  • 2 Department of Clinical Immunology, Health Research Institute of the Hospital Clínico San Carlos/Fundación para la Investigación Biomédica del Hospital Clínico San Carlos (IML and IdISSC), Health Research Institute of the Hospital Clínico San Carlos (IdISSC), Madrid, Spain
  • 3 Department of Immunology, Royal Free London National Heath System (NHS) Foundation Trust, London, United Kingdom
  • 4 Department of Infection Control & Sterile Services, Mater Dei Hospital, Msida, Malta
  • 5 Sorbonne-Université, Cimi-Paris, Institut national de la santé et de la recherche médicale (INSERM) U1135, centre national de la recherche scientifique (CNRS) ERL8255, Université Pierre et Marie Curie Centre de Recherche n°7 (UPMC CR7), Paris, France
  • 6 Departamento de Pediatra, Universidade Federal de Uberlândia, Uberlandia, MG, Brazil
  • 7 Transfusion Medicine Unit, Azienda Sanitaria Territoriale, Ascoli Piceno, Italy
  • 8 Université de Paris, Imagine Institute, Data Science Platform, Institut national de la santé et de la recherche médicale Unité Mixte de Recherche (INSERM UMR) 1163, Paris, France
  • 9 Health-Ecore B.V., Zeist, Netherlands
  • 10 Serviço de Imunoalergologia, Unidade Local de Saúde de Santa Maria, Lisbon, Portugal
  • 11 Department of Molecular Medicine, Sapienza University of Rome, Rome, Italy
  • 12 Department of Pediatrics, University Hospitals Leuven, Department of Microbiology, Immunology and Transplantation, Katholieke Universiteit (KU) Leuven, Leuven, Belgium
  • 13 Department of Paediatrics, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur, Malaysia
  • 14 Department of Internal Medicine, Division of Allergy & Clinical Immunology, Erasmus University Medical Center Rotterdam, Rotterdam, Netherlands
  • 15 Pediatric Hematology-Immunology and Rheumatology Unit, Necker-Enfants malades University Hospital, Assistance Publique-Hôpitaux de Paris (AP-HP), Paris, France
Front Immunol, 2024;15:1430678.
PMID: 39055704 DOI: 10.3389/fimmu.2024.1430678

Abstract

The International Patient Organisation for Primary Immunodeficiencies (IPOPI) held its second Global Multi-Stakeholders' Summit, an annual stimulating and forward-thinking meeting uniting experts to anticipate pivotal upcoming challenges and opportunities in the field of primary immunodeficiency (PID). The 2023 summit focused on three key identified discussion points: (i) How can immunoglobulin (Ig) therapy meet future personalized patient needs? (ii) Pandemic preparedness: what's next for public health and potential challenges for the PID community? (iii) Diagnosing PIDs in 2030: what needs to happen to diagnose better and to diagnose more? Clinician-Scientists, patient representatives and other stakeholders explored avenues to improve Ig therapy through mechanistic insights and tailored Ig preparations/products according to patient-specific needs and local exposure to infectious agents, amongst others. Urgency for pandemic preparedness was discussed, as was the threat of shortage of antibiotics and increasing antimicrobial resistance, emphasizing the need for representation of PID patients and other vulnerable populations throughout crisis and care management. Discussion also covered the complexities of PID diagnosis, addressing issues such as global diagnostic disparities, the integration of patient-reported outcome measures, and the potential of artificial intelligence to increase PID diagnosis rates and to enhance diagnostic precision. These proceedings outline the outcomes and recommendations arising from the 2023 IPOPI Global Multi-Stakeholders' Summit, offering valuable insights to inform future strategies in PID management and care. Integral to this initiative is its role in fostering collaborative efforts among stakeholders to prepare for the multiple challenges facing the global PID community.

* Title and MeSH Headings from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.