TY - JOUR
T1 - Charting a course for global progress in PIDs by 2030 — proceedings from the IPOPI global multi-stakeholders’ summit (September 2023)
AU - Van Coillie, Samya
AU - Prévot, Johan
AU - Sánchez-Ramón, Silvia
AU - Lowe, David M.
AU - Borg, Michael
AU - Autran, Brigitte
AU - Segundo, Gesmar
AU - Pecoraro, Antonio
AU - Garcelon, Nicolas
AU - Boersma, Cornelis
AU - Silva, Susana L.
AU - Drabwell, Jose
AU - Quinti, Isabella
AU - Meyts, Isabelle
AU - Ali, Adli
AU - Burns, Siobhan O.
AU - van Hagen, Martin
AU - Pergent, Martine
AU - Mahlaoui, Nizar
N1 - Publisher Copyright:
Copyright © 2024 Van Coillie, Prévot, Sánchez-Ramón, Lowe, Borg, Autran, Segundo, Pecoraro, Garcelon, Boersma, Silva, Drabwell, Quinti, Meyts, Ali, Burns, van Hagen, Pergent and Mahlaoui.
PY - 2024
Y1 - 2024
N2 - 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.
AB - 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.
KW - antimicrobial resistance (AMR)
KW - artificial intelligence (AI)
KW - immunoglobulin replacement therapy (IGRT)
KW - pandemic preparedness
KW - patient-reported outcome measures (PROMs)
KW - primary immunodeficiencies (PID)
KW - rare diseases (RD)
KW - targeted therapies
U2 - 10.3389/fimmu.2024.1430678
DO - 10.3389/fimmu.2024.1430678
M3 - Article
AN - SCOPUS:85198048337
SN - 1664-3224
VL - 15
JO - Frontiers in Immunology
JF - Frontiers in Immunology
M1 - 1430678
ER -