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The PID Principles of Care: Where Are We Now? A Global Status Report Based on the PID Life Index

A global gold standard framework for primary immunodeficiency (PID) care, structured around six principles, was published in 2014. To measure the implementation status of these principles IPOPI developed the PID Life Index in 2020, an interactive tool aggregating national PID data. This development...

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Autores principales: Nordin, Julia, Solís, Leire, Prévot, Johan, Mahlaoui, Nizar, Chapel, Helen, Sánchez-Ramón, Silvia, Ali, Adli, Seymour, John W., Pergent, Martine
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8637458/
https://www.ncbi.nlm.nih.gov/pubmed/34868053
http://dx.doi.org/10.3389/fimmu.2021.780140
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author Nordin, Julia
Solís, Leire
Prévot, Johan
Mahlaoui, Nizar
Chapel, Helen
Sánchez-Ramón, Silvia
Ali, Adli
Seymour, John W.
Pergent, Martine
author_facet Nordin, Julia
Solís, Leire
Prévot, Johan
Mahlaoui, Nizar
Chapel, Helen
Sánchez-Ramón, Silvia
Ali, Adli
Seymour, John W.
Pergent, Martine
author_sort Nordin, Julia
collection PubMed
description A global gold standard framework for primary immunodeficiency (PID) care, structured around six principles, was published in 2014. To measure the implementation status of these principles IPOPI developed the PID Life Index in 2020, an interactive tool aggregating national PID data. This development was combined with a revision of the principles to consider advances in the field of health and science as well as political developments since 2014. The revision resulted in the following six principles: PID diagnosis, treatments, universal health coverage, specialised centres, national patient organisations and registries for PIDs. A questionnaire corresponding to these principles was sent out to IPOPI’s national member organisations and to countries in which IPOPI had medical contacts, and data was gathered from 60 countries. The data demonstrates that, regardless of global scientific progress on PIDs with a growing number of diagnostic tools and better treatment options becoming available, the accessibility and affordability of these remains uneven throughout the world. It is not only visible between regions, but also between countries within the same region. One of the most urgent needs is medical education. In countries without immunologists, patients with PID suffer the risk of remaining undiagnosed or misdiagnosed, resulting in health implications or even death. Many countries also lack the infrastructure needed to carry out more advanced diagnostic tests and perform treatments such as hematopoietic stem cell transplantation or gene therapy. The incapacity to secure appropriate diagnosis and treatments affects the PID environment negatively in these countries. Availability and affordability also remain key issues, as diagnosis and treatments require coverage/reimbursement to ensure that patients with PID can access them in practice, not only in theory. This is still not the case in many countries of the world according to the PID Life Index. Although some countries do perform better than others, to date no country has fully implemented the PID principles of care, confirming the long way ahead to ensure an optimal environment for patients with PID in every country.
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spelling pubmed-86374582021-12-03 The PID Principles of Care: Where Are We Now? A Global Status Report Based on the PID Life Index Nordin, Julia Solís, Leire Prévot, Johan Mahlaoui, Nizar Chapel, Helen Sánchez-Ramón, Silvia Ali, Adli Seymour, John W. Pergent, Martine Front Immunol Immunology A global gold standard framework for primary immunodeficiency (PID) care, structured around six principles, was published in 2014. To measure the implementation status of these principles IPOPI developed the PID Life Index in 2020, an interactive tool aggregating national PID data. This development was combined with a revision of the principles to consider advances in the field of health and science as well as political developments since 2014. The revision resulted in the following six principles: PID diagnosis, treatments, universal health coverage, specialised centres, national patient organisations and registries for PIDs. A questionnaire corresponding to these principles was sent out to IPOPI’s national member organisations and to countries in which IPOPI had medical contacts, and data was gathered from 60 countries. The data demonstrates that, regardless of global scientific progress on PIDs with a growing number of diagnostic tools and better treatment options becoming available, the accessibility and affordability of these remains uneven throughout the world. It is not only visible between regions, but also between countries within the same region. One of the most urgent needs is medical education. In countries without immunologists, patients with PID suffer the risk of remaining undiagnosed or misdiagnosed, resulting in health implications or even death. Many countries also lack the infrastructure needed to carry out more advanced diagnostic tests and perform treatments such as hematopoietic stem cell transplantation or gene therapy. The incapacity to secure appropriate diagnosis and treatments affects the PID environment negatively in these countries. Availability and affordability also remain key issues, as diagnosis and treatments require coverage/reimbursement to ensure that patients with PID can access them in practice, not only in theory. This is still not the case in many countries of the world according to the PID Life Index. Although some countries do perform better than others, to date no country has fully implemented the PID principles of care, confirming the long way ahead to ensure an optimal environment for patients with PID in every country. Frontiers Media S.A. 2021-11-18 /pmc/articles/PMC8637458/ /pubmed/34868053 http://dx.doi.org/10.3389/fimmu.2021.780140 Text en Copyright © 2021 Nordin, Solís, Prévot, Mahlaoui, Chapel, Sánchez-Ramón, Ali, Seymour and Pergent https://creativecommons.org/licenses/by/4.0/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.
spellingShingle Immunology
Nordin, Julia
Solís, Leire
Prévot, Johan
Mahlaoui, Nizar
Chapel, Helen
Sánchez-Ramón, Silvia
Ali, Adli
Seymour, John W.
Pergent, Martine
The PID Principles of Care: Where Are We Now? A Global Status Report Based on the PID Life Index
title The PID Principles of Care: Where Are We Now? A Global Status Report Based on the PID Life Index
title_full The PID Principles of Care: Where Are We Now? A Global Status Report Based on the PID Life Index
title_fullStr The PID Principles of Care: Where Are We Now? A Global Status Report Based on the PID Life Index
title_full_unstemmed The PID Principles of Care: Where Are We Now? A Global Status Report Based on the PID Life Index
title_short The PID Principles of Care: Where Are We Now? A Global Status Report Based on the PID Life Index
title_sort pid principles of care: where are we now? a global status report based on the pid life index
topic Immunology
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8637458/
https://www.ncbi.nlm.nih.gov/pubmed/34868053
http://dx.doi.org/10.3389/fimmu.2021.780140
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