Navigating disruption in the PID landscape: embracing opportunities and anticipating threats in the next ten years

Lúcia Mamede; Roser Cantenys Sabà; Samya Van Coillie; Johan Prévot; Silvia Sánchez-Ramón; Cecilia Poli; Anne Barasa; Björn W. Schuller; Ayal Hendel; Nicolas Garcelon; Cornelis Boersma; Pamela Lee; Claire Booth; Luigi D. Notarangelo; Jose Drabwell; Nicholas L. Rider; Frank J.T. Staal; Siobhan O. Burns; Martin Van Hagen; Martine Pergent; Jacques G. Rivière; Nizar Mahlaoui

doi:10.3389/fimmu.2025.1596971

Navigating disruption in the PID landscape: embracing opportunities and anticipating threats in the next ten years

Lúcia Mamede
, Roser Cantenys Sabà
, Samya Van Coillie
, Johan Prévot
, Silvia Sánchez-Ramón
, Cecilia Poli
, Anne Barasa
, Björn W. Schuller
, Ayal Hendel
, Nicolas Garcelon
, Cornelis Boersma
, Pamela Lee
, Claire Booth
, Luigi D. Notarangelo
, Jose Drabwell
, Nicholas L. Rider
, Frank J.T. Staal
, Siobhan O. Burns
, Martin Van Hagen
, Martine Pergent

Jacques G. Rivière, Nizar Mahlaoui^*

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

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Abstract

Introduction:

The International Patient Organisation for Primary Immunodeficiencies (IPOPI) held its third edition of the Global Multi-Stakeholders’ Summit, gathering key primary immunodeficiencies (PID) stakeholders and experts to discuss and foment global collaboration.

Methods:

This edition focused on the impact of genomic medicine in PID treatment, the role of digital health, including artificial intelligence, in PID care, and how to anticipate and minimise risks to ensure optimal patient access to care.

Results:

These discussions aimed to examine current hurdles and brainstorm feasible solutions and priorities for the PID community in these areas in the next ten years.

Discussion:

These discussions led to recommendations for comprehensive approaches to care and access to treatment for PID patients, suggesting actions that will bring the community closer to treatments based on real-world evidence and adjusted to patient’s needs. To accomplish this, collaboration between academia, industry, regulatory authorities, and patients is crucial.

Original language	English
Article number	1596971
Journal	Frontiers in Immunology
Volume	16
DOIs	https://doi.org/10.3389/fimmu.2025.1596971
Publication status	Published - 17 Jun 2025

Bibliographical note

Publisher Copyright:
Copyright © 2025 Mamede, Sabà, Van Coillie, Prévot, Sánchez-Ramón, Poli, Barasa, Schuller, Hendel, Garcelon, Boersma, Lee, Booth, Notarangelo, Drabwell, Rider, Staal, Burns, Van Hagen, Pergent, Rivière and Mahlaoui.

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Navigating disruption in the PID landscapeFinal published version, 547 KBLicence: CC BY

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Mamede, L., Sabà, R. C., Van Coillie, S., Prévot, J., Sánchez-Ramón, S., Poli, C., Barasa, A., Schuller, B. W., Hendel, A., Garcelon, N., Boersma, C., Lee, P., Booth, C., Notarangelo, L. D., Drabwell, J., Rider, N. L., Staal, F. J. T., Burns, S. O., Van Hagen, M., ... Mahlaoui, N. (2025). Navigating disruption in the PID landscape: embracing opportunities and anticipating threats in the next ten years. Frontiers in Immunology, 16, Article 1596971. https://doi.org/10.3389/fimmu.2025.1596971

@article{ce8b29d971ad4fd49b384121b4dcf843,

title = "Navigating disruption in the PID landscape: embracing opportunities and anticipating threats in the next ten years",

abstract = "Introduction: The International Patient Organisation for Primary Immunodeficiencies (IPOPI) held its third edition of the Global Multi-Stakeholders{\textquoteright} Summit, gathering key primary immunodeficiencies (PID) stakeholders and experts to discuss and foment global collaboration. Methods:This edition focused on the impact of genomic medicine in PID treatment, the role of digital health, including artificial intelligence, in PID care, and how to anticipate and minimise risks to ensure optimal patient access to care. Results: These discussions aimed to examine current hurdles and brainstorm feasible solutions and priorities for the PID community in these areas in the next ten years. Discussion: These discussions led to recommendations for comprehensive approaches to care and access to treatment for PID patients, suggesting actions that will bring the community closer to treatments based on real-world evidence and adjusted to patient{\textquoteright}s needs. To accomplish this, collaboration between academia, industry, regulatory authorities, and patients is crucial.",

author = "L{\'u}cia Mamede and Sab{\`a}, \{Roser Cantenys\} and \{Van Coillie\}, Samya and Johan Pr{\'e}vot and Silvia S{\'a}nchez-Ram{\'o}n and Cecilia Poli and Anne Barasa and Schuller, \{Bj{\"o}rn W.\} and Ayal Hendel and Nicolas Garcelon and Cornelis Boersma and Pamela Lee and Claire Booth and Notarangelo, \{Luigi D.\} and Jose Drabwell and Rider, \{Nicholas L.\} and Staal, \{Frank J.T.\} and Burns, \{Siobhan O.\} and \{Van Hagen\}, Martin and Martine Pergent and Rivi{\`e}re, \{Jacques G.\} and Nizar Mahlaoui",

note = "Publisher Copyright: Copyright {\textcopyright} 2025 Mamede, Sab{\`a}, Van Coillie, Pr{\'e}vot, S{\'a}nchez-Ram{\'o}n, Poli, Barasa, Schuller, Hendel, Garcelon, Boersma, Lee, Booth, Notarangelo, Drabwell, Rider, Staal, Burns, Van Hagen, Pergent, Rivi{\`e}re and Mahlaoui.",

year = "2025",

month = jun,

day = "17",

doi = "10.3389/fimmu.2025.1596971",

language = "English",

volume = "16",

journal = "Frontiers in Immunology",

issn = "1664-3224",

publisher = "Frontiers Media SA",

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Mamede, L, Sabà, RC, Van Coillie, S, Prévot, J, Sánchez-Ramón, S, Poli, C, Barasa, A, Schuller, BW, Hendel, A, Garcelon, N, Boersma, C, Lee, P, Booth, C, Notarangelo, LD, Drabwell, J, Rider, NL, Staal, FJT, Burns, SO, Van Hagen, M, Pergent, M, Rivière, JG & Mahlaoui, N 2025, 'Navigating disruption in the PID landscape: embracing opportunities and anticipating threats in the next ten years', Frontiers in Immunology, vol. 16, 1596971. https://doi.org/10.3389/fimmu.2025.1596971

TY - JOUR

T1 - Navigating disruption in the PID landscape

T2 - embracing opportunities and anticipating threats in the next ten years

AU - Mamede, Lúcia

AU - Sabà, Roser Cantenys

AU - Van Coillie, Samya

AU - Prévot, Johan

AU - Sánchez-Ramón, Silvia

AU - Poli, Cecilia

AU - Barasa, Anne

AU - Schuller, Björn W.

AU - Hendel, Ayal

AU - Garcelon, Nicolas

AU - Boersma, Cornelis

AU - Lee, Pamela

AU - Booth, Claire

AU - Notarangelo, Luigi D.

AU - Drabwell, Jose

AU - Rider, Nicholas L.

AU - Staal, Frank J.T.

AU - Burns, Siobhan O.

AU - Van Hagen, Martin

AU - Pergent, Martine

AU - Rivière, Jacques G.

AU - Mahlaoui, Nizar

N1 - Publisher Copyright: Copyright © 2025 Mamede, Sabà, Van Coillie, Prévot, Sánchez-Ramón, Poli, Barasa, Schuller, Hendel, Garcelon, Boersma, Lee, Booth, Notarangelo, Drabwell, Rider, Staal, Burns, Van Hagen, Pergent, Rivière and Mahlaoui.

PY - 2025/6/17

Y1 - 2025/6/17

N2 - Introduction: The International Patient Organisation for Primary Immunodeficiencies (IPOPI) held its third edition of the Global Multi-Stakeholders’ Summit, gathering key primary immunodeficiencies (PID) stakeholders and experts to discuss and foment global collaboration. Methods:This edition focused on the impact of genomic medicine in PID treatment, the role of digital health, including artificial intelligence, in PID care, and how to anticipate and minimise risks to ensure optimal patient access to care. Results: These discussions aimed to examine current hurdles and brainstorm feasible solutions and priorities for the PID community in these areas in the next ten years. Discussion: These discussions led to recommendations for comprehensive approaches to care and access to treatment for PID patients, suggesting actions that will bring the community closer to treatments based on real-world evidence and adjusted to patient’s needs. To accomplish this, collaboration between academia, industry, regulatory authorities, and patients is crucial.

AB - Introduction: The International Patient Organisation for Primary Immunodeficiencies (IPOPI) held its third edition of the Global Multi-Stakeholders’ Summit, gathering key primary immunodeficiencies (PID) stakeholders and experts to discuss and foment global collaboration. Methods:This edition focused on the impact of genomic medicine in PID treatment, the role of digital health, including artificial intelligence, in PID care, and how to anticipate and minimise risks to ensure optimal patient access to care. Results: These discussions aimed to examine current hurdles and brainstorm feasible solutions and priorities for the PID community in these areas in the next ten years. Discussion: These discussions led to recommendations for comprehensive approaches to care and access to treatment for PID patients, suggesting actions that will bring the community closer to treatments based on real-world evidence and adjusted to patient’s needs. To accomplish this, collaboration between academia, industry, regulatory authorities, and patients is crucial.

UR - https://www.scopus.com/pages/publications/105009715599

U2 - 10.3389/fimmu.2025.1596971

DO - 10.3389/fimmu.2025.1596971

M3 - Article

C2 - 40599777

AN - SCOPUS:105009715599

SN - 1664-3224

VL - 16

JO - Frontiers in Immunology

JF - Frontiers in Immunology

M1 - 1596971

ER -

Navigating disruption in the PID landscape: embracing opportunities and anticipating threats in the next ten years

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