Van Coillie, Samya;
Prevot, Johan;
Sanchez-Ramon, Silvia;
Lowe, David M;
Borg, Michael;
Autran, Brigitte;
Segundo, Gesmar;
... Mahlaoui, Nizar; + view all
(2024)
Charting a course for global progress in PIDs by 2030 — proceedings from the IPOPI global multi-stakeholders’ summit (September 2023).
Frontiers in Immunology
, 15
, Article 1430678. 10.3389/fimmu.2024.1430678.
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Charting a course for global progress in PIDs by 2030 - proceedings from the IPOPI global multi-stakeholders summit (Septemb.pdf - Published Version Download (635kB) | Preview |
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.
| Type: | Article |
|---|---|
| Title: | Charting a course for global progress in PIDs by 2030 — proceedings from the IPOPI global multi-stakeholders’ summit (September 2023) |
| Location: | Switzerland |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.3389/fimmu.2024.1430678 |
| Publisher version: | https://doi.org/10.3389/fimmu.2024.1430678 |
| Language: | English |
| Additional information: | © 2024 Van Coillie, Prévot, Sánchez-Ramón, Lowe, Borg, Autran, Segundo, Pecoraro, Garcelon, Boersma, Silva, Drabwell, Quinti, Meyts, Ali, Burns, van Hagen, Pergent and Mahlaoui. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms. https://creativecommons.org/licenses/by/4.0/ |
| Keywords: | primary immunodeficiencies (PID), rare diseases (RD), immunoglobulin replacement therapy (IGRT), targeted therapies, pandemic preparedness, antimicrobial resistance (AMR), patient-reported outcome measures (PROMs), artificial intelligence (AI) |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Infection and Immunity |
| URI: | https://discovery-pp.ucl.ac.uk/id/eprint/10196970 |
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