Evidence map›Paper›PMID 40599777›Full record

ReviewFrontiers in immunology2025

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 and 12 more

Abstract readReview
PubMed Full text at PMC Publisher
In one paragraph

Review in Frontiers in immunology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed.

  1. Review
  2. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

22 authors.

Lúcia MamedeInternational Patient Organisation for Primary Immunodeficiencies (IPOPI)I, Brussels, Belgium.
Roser Cantenys SabàCatalan Health Service, Barcelona, Spain.
Samya Van CoillieInternational Patient Organisation for Primary Immunodeficiencies (IPOPI)I, Brussels, Belgium.
Johan PrévotInternational Patient Organisation for Primary Immunodeficiencies (IPOPI)I, Brussels, Belgium.
Silvia Sánchez-RamónDepartment of Clinical Immunology, Instituto de Medicina de Laboratorio (IML) and Health Research Institute of the Hospital Clínico San Carlos (IdISSC), Madrid, Spain.
Cecilia PoliFacultad de Medicina Clínica Alemana de Santiago, Universidad del Desarrollo, Santiago, Chile.
Anne BarasaImmunology Unit, Department of Human Pathology, University of Nairobi, Nairobi, Kenya.
Björn W SchullerCHI - the Chair of Health Informatics, Technical University of Munich University Hospital, Munich, Germany.
Ayal HendelInstitute of Nanotechnology and Advanced Materials, The Goodman Faculty of Life Sciences, Bar-Ilan University, Ramat Gan, Israel.
Nicolas GarcelonUniversité de Paris, Imagine Institute, Data Science Platform, INSERM UMR 1163, Paris, France.
Cornelis BoersmaHealth-Ecore B.V., Zeist, Netherlands.
Pamela LeeDepartment of Paediatrics and Adolescent Medicine, LKS Faculty of Medicine, The University of Hong Kong, Hong Kong, Hong Kong SAR, China.
Claire BoothDepartment of Paediatric Immunology and Gene Therapy, Great Ormond Street Hospital, London, United Kingdom.
Luigi D NotarangeloLaboratory of Clinical Immunology and Microbiology, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, MD, United States.
Jose DrabwellInternational Patient Organisation for Primary Immunodeficiencies (IPOPI)I, Brussels, Belgium.
Nicholas L RiderDepartment of Health Systems and Implementation Science, Virginia Tech Carilion School of Medicine, Roanoke, VA, United States.
Frank J T StaalThe Department of Pediatrics, Pediatric Stem Cell Transplantation Program, Willem-Alexander Children's Hospital, Leiden, Netherlands.
Siobhan O BurnsDepartment of Immunology, Royal Free London NHS Foundation Trust, London, United Kingdom.
Martin Van HagenDepartments of Internal Medicine, Division of Allergy & Clinical Immunology, Immunology, Erasmus University Medical Center Rotterdam, Rotterdam, Netherlands.
Martine PergentInternational Patient Organisation for Primary Immunodeficiencies (IPOPI)I, Brussels, Belgium.
Jacques G RivièreUniversitat Autònoma de Barcelona (UAB), Barcelona, Catalonia, Spain.
Nizar MahlaouiInternational Patient Organisation for Primary Immunodeficiencies (IPOPI)I, Brussels, Belgium.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Indexed as

Immunologic Deficiency SyndromesPrimary Immunodeficiency DiseasesArtificial IntelligenceHumansartificial intelligence - AIdigital healthgene therapy (GT)immunoglobulin replacement therapy (IGRT)inborn errors of immunity (IEI)patient-reported outcome measures (PROMs)primary immunodeficiencies (PIDs)targeted therapies

Identifiers

PMID40599777
PMCPMC12209282

What OpenQuestion holds

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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.