Evidence map›Paper›PMID 39690292›Full record

ArticleJournal of clinical immunology2024

Recommendations for Transitioning Young People with Primary Immunodeficiency Disorders and Autoinflammatory Diseases to Adult Care.

Muskan Israni, Eliska Alderson, Nizar Mahlaoui, Laura Obici, Linda Rossi-Semerano, Helen Lachmann, Mojca Zajc Avramovič, Aurelien Guffroy, Virgil Dalm, Rachel Rimmer and 15 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of clinical immunology, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed, 1 pooled it
–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

5 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Article
  3. Review
  4. Review
  5. 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

25 authors.

Muskan IsraniDepartment of Immunology, Royal Free London NHS Foundation Trust, London, UK.
Eliska AldersonDepartment of Immunology, Royal Free London NHS Foundation Trust, London, UK.
Nizar MahlaouiPediatric Immuno-Haematology and Rheumatology Unit, Necker Enfants Malades University Hospital, Assistance Publique-Hôpitaux de Paris (AP-HP), Paris, France.
Laura ObiciFondazione IRCCS Policlinico San Matteo, Centro Per Lo Studio E La Cura Delle Amiloidosi Sistemiche, Pavia, Italy.
Linda Rossi-SemeranoDepartment of Pediatric Rheumatology, National Reference Centre for Auto-Inflammatory Diseases and Amyloidosis of Inflammatory Origin (CEREMAIA), Bicêtre Hospital, Assistance Publique-Hôpitaux de Paris (AP-HP), Le Kremlin Bicêtre, France.
Helen LachmannDivision of Medicine, National Amyloidosis Centre, University College London, London, UK.
Mojca Zajc AvramovičDepartment for Allergology, Rheumatology and Clinical Immunology, University Children's Hospital Ljubljana, Ljubljana, Slovenia.
Aurelien GuffroyDepartment of Clinical Immunology and Internal Medicine, National Reference Center for Systemic Autoimmune Diseases (CNR RESO), Tertiary Center for Primary Immunodeficiency, Hôpitaux Universitaires de Strasbourg, 67000, Strasbourg, France.
Virgil DalmDepartment of Internal Medicine, Division of Clinical Immunology, Erasmus University Medical Center, Rotterdam, Netherlands.
Rachel RimmerRare Autoinflammatory Conditions Community - UK (RACC - UK), Eynsham, UK.
Leire SolisInternational Patient Organisation for Primary Immunodeficiencies (IPOPI), Brussels, Belgium.
Carlota VillarBarcelona PID Foundation, Barcelona, Catalonia, Spain.
Andrew R GenneryPaediatric Haematopoietic Stem Cell Transplant Unit, Great North Children's Hospital (GNCH), Royal Victoria Infirmary, Queen Victoria Road, Newcastle Upon Tyne, NE1 4LP, UK.
Stephanie SkeffingtonIrish Vasculitis Organisation, Tipperary, Ireland.
Julia NordinInternational Patient Organisation for Primary Immunodeficiencies (IPOPI), Brussels, Belgium.
Klaus WarnatzCenter for Chronic Immunodeficiency, Medical Center - University of Freiburg, Faculty of Medicine, University of Freiburg, Freiburg, Germany.
Anne-Sophie KorganowDepartment of Clinical Immunology and Internal Medicine, National Reference Center for Systemic Autoimmune Diseases (CNR RESO), Tertiary Center for Primary Immunodeficiency, Hôpitaux Universitaires de Strasbourg, 67000, Strasbourg, France.
Jordi AntónDepartment of Pediatric Rheumatology, Sant Joan de Déu Hospital, Pediatric Immune Dysfunction Disease Study Group (GEMDIP), Institut de Recerca Sant Joan de Déu, Barcelona, Spain.
Marco CattaliniPediatrics Clinic, University of Brescia and ASST Spedali Civili Di Brescia, Brescia, Italy.
Stefan BergDepartment of Pediatrics, Institute of Clinical Sciences, The Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
Pere Soler-PalacinPediatric Infectious Diseases and Immunodeficiencies Unit, Children's Hospital, Vall d'Hebron, Barcelona Hospital Campus, Barcelona, Catalonia, Spain.
Mari Campbell *Department of Immunology, Royal Free London NHS Foundation Trust, London, UK. mari.campbell@nhs.net.
Siobhan O Burns *Department of Immunology, Royal Free London NHS Foundation Trust, London, UK. siobhan.burns@ucl.ac.uk.
ESID Clinical Working Party
ERN RITA Transition Working Group Consortium

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

purposeSignificant improvements in the prognosis for young patients with Primary Immunodeficiency Diseases (PID) and Autoinflammatory Disorders (AID), which together make up the majority of Inborn Errors of Immunity (IEI), have resulted in the need for optimisation of transition and transfer of care to adult services. Effective transition is crucial to improve health outcomes and treatment compliance among patients. Evaluations of existing transition programmes in European health centres identified the absence of disease-specific transition guidelines for PID and AID, as a challenge to the transition process. This research aimed to establish expert consensus statements for the transition of young patients with PID and AID to adult services.

methodsThis project used the Delphi method to establish mutual agreement for the proposed recommendations. A draft set of statements was developed following a literature review of existing transition programmes. Then the ERN RITA Transition Working Group convened to review the drafted recommendations and develop them into a survey. This survey was circulated among healthcare professionals to determine consensus using a five-point Likert scale, with the level of agreement set to 80% or greater. Statements that did not reach consensus were revised by the Working Group and recirculated among respondents.

resultsThe initial survey received 93 responses from 68 centres across 23 countries, while the following survey outlining revised recommendations received 66 responses. The respondents agreed upon recommendations detailing the structure and administration of transition programmes, collaborative working with social systems, and contraindications to transfer of care.

conclusionThis paper sets out a comprehensive set of recommendations to optimise transitional care for PID and AID.

Indexed as

Transition to Adult CareAdolescentAdultConsensusDelphi TechniqueHumansImmunologic Deficiency SyndromesPrimary Immunodeficiency DiseasesSurveys and QuestionnairesYoung Adultautoinflammatory diseasesinborn errors of immunityprimary immunodeficiency disordersrecommendationsTransition

Identifiers

PMID39690292
PMCPMC11652586

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.