Current Transition Practice for Primary Immunodeficiencies and Autoinflammatory Diseases in Europe: a RITA-ERN Survey.

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Current Transition Practice for Primary Immunodeficiencies and Autoinflammatory Diseases in Europe: a RITA-ERN Survey.

Israni, Muskan (author)

Nicholson, Bethany (author)

Mahlaoui, Nizar (author)

Obici, Laura (author)

Rossi-Semerano, Linda (author)

Lachmann, Helen (author)

Hayward, Georgia (author)

Avramovič, Mojca Zajc (author)

Guffroy, Aurelien (author)

Dalm, Virgil (author)

Rimmer, Rachel (author)

Solis, Leire (author)

Villar, Carlotta (author)

Gennery, Andrew R (author)

Skeffington, Stephanie (author)

Nordin, Julia (author)

Warnatz, Klaus (author)

Korganow, Anne-Sophie (author)

Antón, Jordi (author)

Cattalini, Marco (author)

Amin, Tania (author)

Berg, Stephan (author)

Soler-Palacin, Pere (author)

Burns, Siobhan O (author)

Campbell, Mari (author)

Ekwall, Olov, 1968 (author): Gothenburg University,Göteborgs universitet,Institutionen för kliniska vetenskaper, Avdelningen för pediatrik,Institute of Clinical Sciences, Department of Pediatrics

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2022-10-12
2023
English.
In: Journal of clinical immunology. - : Springer Science and Business Media LLC. - 0271-9142 .- 1573-2592. ; 43:1, s. 206-216

Related links:: https://gup.ub.gu.se...; show more...; https://doi.org/10.1...; show less...

Journal article (peer-reviewed)

Abstract Subject headings

Due to the absence of curative treatments for inborn errors of immunity (IEI), children born with IEI require long-term follow-up for disease manifestations and related complications that occur over the lifespan. Effective transition from pediatric to adult services is known to significantly improve adherence to treatment and long-term outcomes. It is currently not known what transition services are available for young people with IEI in Europe.To understand the prevalence and practice of transition services in Europe for young people with IEI, encompassing both primary immunodeficiencies (PID) and systemic autoinflammatory disorders (AID).A survey was generated by the European Reference Network on immunodeficiency, autoinflammatory, and autoimmune diseases Transition Working Group and electronically circulated, through professional networks, to pediatric centers across Europe looking after children with IEI.Seventy-six responses were received from 52 centers, in 45 cities across 17 different countries. All services transitioned patients to adult services, mainly to specialist PID or AID centers, typically transferring up to ten patients to adult care each year. The transition process started at a median age of 16-18years with transfer to the adult center occurring at a median age of 18-20years. 75% of PID and 68% of AID centers held at least one joint appointment with pediatric and adult services prior to the transfer of care. Approximately 75% of PID and AID services reported having a defined transition process, but few centers reported national disease-specific transition guidelines to refer to.Transition services for children with IEI in Europe are available in many countries but lack standardized guidelines to promote best practice.

Subject headings

MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Pediatrik (hsv//swe)
MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Pediatrics (hsv//eng)
MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Reumatologi och inflammation (hsv//swe)
MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Rheumatology and Autoimmunity (hsv//eng)

Keyword

Adult
Humans
Child
Adolescent
Young Adult
Europe
epidemiology
Immunologic Deficiency Syndromes
diagnosis
epidemiology
therapy
Autoimmune Diseases
diagnosis
epidemiology
therapy
Prevalence
Hereditary Autoinflammatory Diseases

Publication and Content Type

ref (subject category)
art (subject category)

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MEDICAL AND HEALTH SCIENCES: MEDICAL AND HEAL ...; and Clinical Medicin ...; and Pediatrics

MEDICAL AND HEALTH SCIENCES: MEDICAL AND HEAL ...; and Clinical Medicin ...; and Rheumatology and ...

Articles in the publication: Journal of clini ...

By the university: University of Gothenburg

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