Consensus protocols for the diagnosis and management of the hereditary autoinflammatory syndromes CAPS, TRAPS and MKD/HIDS: a German PRO-KIND initiative
Identifieur interne : 000477 ( 2020/Analysis ); précédent : 000476; suivant : 000478Consensus protocols for the diagnosis and management of the hereditary autoinflammatory syndromes CAPS, TRAPS and MKD/HIDS: a German PRO-KIND initiative
Auteurs : Sandra Hansmann [Allemagne] ; Elke Lainka [Allemagne] ; Gerd Horneff [Allemagne] ; Dirk Holzinger [Allemagne] ; Nikolaus Rieber [Allemagne] ; Annette F. Jansson [Allemagne] ; Angela Rösen-Wolff [Allemagne] ; Gabi Erbis [Allemagne] ; Martina Prelog [Allemagne] ; Juergen Brunner [Autriche] ; Susanne M. Benseler [Allemagne, Canada] ; Jasmin B. Kuemmerle-Deschner [Allemagne]Source :
- Pediatric Rheumatology Online Journal [ 1546-0096 ] ; 2020.
Abstract
Rare autoinflammatory diseases (AIDs) including Cryopyrin-Associated Periodic Syndrome (CAPS), Tumor Necrosis Receptor-Associated Periodic Syndrome (TRAPS) and Mevalonate Kinase Deficiency Syndrome (MKD)/ Hyper-IgD Syndrome (HIDS) are genetically defined and characterized by recurrent fever episodes and inflammatory organ manifestations. Early diagnosis and early start of effective therapies control the inflammation and prevent organ damage. The PRO-KIND initiative of the German Society of Pediatric Rheumatology (GKJR) aims to harmonize the diagnosis and management of children with rheumatic diseases nationally. The task of the PRO-KIND CAPS/TRAPS/MKD/HIDS working group was to develop evidence-based, consensus diagnosis and management protocols including the first AID treat-to-target strategies.
The national CAPS/TRAPS/MKD/HIDS expert working group was established, defined its aims and conducted a comprehensive literature review synthesising the recent (2013 to 2018) published evidence including all available recommendations for diagnosis and management. General and disease-specific statements were anchored in the 2015 SHARE recommendations. An iterative expert review process discussed, adapted and refined these statements. Ultimately the GKJR membership vetted the proposed consensus statements, agreement of 80% was mandatory for inclusion. The approved statements were integrated into three disease specific consensus treatment plans (CTPs). These were developed to enable the implementation of evidence-based, standardized care into clinical practice.
The CAPS/TRAPS/MKD/HIDS expert working group of 12 German and Austrian paediatric rheumatologists completed the evidence synthesis and modified a total of 38 statements based on the SHARE recommendation framework. In iterative reviews 36 reached the mandatory agreement threshold of 80% in the final GKJR member survey. These included 9 overarching principles and 27 disease-specific statements (7 for CAPS, 11 TRAPS, 9 MKD/HIDS). A diagnostic algorithm was established based on the synthesized evidence. Statements were integrated into diagnosis- and disease activity specific treat-to-target CTPs for CAPS, TRAPS and MKD/HIDS.
The PRO-KIND CAPS/TRAPS/MKD/HIDS working group established the first evidence-based, actionable treat-to-target consensus treatment plans for three rare hereditary autoinflammatory diseases. These provide a path to a rapid evaluation, effective control of disease activity and tailored adjustment of therapies. Their implementation will decrease variation in care and optimize health outcomes for children with AID.
Url:
DOI: 10.1186/s12969-020-0409-3
PubMed: 32066461
PubMed Central: 7027082
Affiliations:
- Allemagne, Autriche, Canada
- District de Cologne, District de Dresde, Rhénanie-du-Nord-Westphalie, Saxe (Land)
- Dresde, Sankt Augustin
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PMC:7027082Le document en format XML
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University of Munich,</institution></institution-wrap>Munich, Germany</nlm:aff><country xml:lang="fr">Allemagne</country><wicri:regionArea>Munich</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="Aff6"><institution-wrap><institution-id institution-id-type="ISNI">0000 0001 0196 8249</institution-id><institution-id institution-id-type="GRID">grid.411544.1</institution-id><institution>Department of Pediatrics I,</institution><institution>University Children’s Hospital Tuebingen,</institution></institution-wrap>Tuebingen, Germany</nlm:aff><country xml:lang="fr">Allemagne</country><wicri:regionArea>Tuebingen</wicri:regionArea></affiliation></author><author><name sortKey="Jansson, Annette F" sort="Jansson, Annette F" uniqKey="Jansson A" first="Annette F." last="Jansson">Annette F. Jansson</name><affiliation wicri:level="1"><nlm:aff id="Aff7"><institution-wrap><institution-id institution-id-type="ISNI">0000 0004 0477 2585</institution-id><institution-id institution-id-type="GRID">grid.411095.8</institution-id><institution>Division of Pediatric Rheumatology and Immunology,</institution><institution>Dr. von Hauner Children’s Hospital, University Hospital Munich,</institution></institution-wrap>Munich, Germany</nlm:aff><country xml:lang="fr">Allemagne</country><wicri:regionArea>Munich</wicri:regionArea></affiliation></author><author><name sortKey="Rosen Wolff, Angela" sort="Rosen Wolff, Angela" uniqKey="Rosen Wolff A" first="Angela" last="Rösen-Wolff">Angela Rösen-Wolff</name><affiliation wicri:level="3"><nlm:aff id="Aff8">Department of Pediatrics, University Hospital Carl Gustav Carus, TU Dresden, Dresden, Germany</nlm:aff><country xml:lang="fr">Allemagne</country><wicri:regionArea>Department of Pediatrics, University Hospital Carl Gustav Carus, TU Dresden, Dresden</wicri:regionArea><placeName><region type="land" nuts="1">Saxe (Land)</region><region type="district" nuts="2">District de Dresde</region><settlement type="city">Dresde</settlement></placeName></affiliation></author><author><name sortKey="Erbis, Gabi" sort="Erbis, Gabi" uniqKey="Erbis G" first="Gabi" last="Erbis">Gabi Erbis</name><affiliation wicri:level="1"><nlm:aff id="Aff1"><institution-wrap><institution-id institution-id-type="ISNI">0000 0001 0196 8249</institution-id><institution-id institution-id-type="GRID">grid.411544.1</institution-id><institution>Department of Pediatric Rheumatology, autoinflammation reference centre Tuebingen (arcT),</institution><institution>University Children’s Hospital Tuebingen,</institution></institution-wrap>Tuebingen, Germany</nlm:aff><country xml:lang="fr">Allemagne</country><wicri:regionArea>Tuebingen</wicri:regionArea></affiliation></author><author><name sortKey="Prelog, Martina" sort="Prelog, Martina" uniqKey="Prelog M" first="Martina" last="Prelog">Martina Prelog</name><affiliation wicri:level="1"><nlm:aff id="Aff9"><institution-wrap><institution-id institution-id-type="ISNI">0000 0001 1378 7891</institution-id><institution-id institution-id-type="GRID">grid.411760.5</institution-id><institution>Department of Pediatrics, Pediatric Rheumatology and Special Immunology,</institution><institution>University Hospital Wuerzburg,</institution></institution-wrap>Wuerzburg, Germany</nlm:aff><country xml:lang="fr">Allemagne</country><wicri:regionArea>Wuerzburg</wicri:regionArea></affiliation></author><author><name sortKey="Brunner, Juergen" sort="Brunner, Juergen" uniqKey="Brunner J" first="Juergen" last="Brunner">Juergen Brunner</name><affiliation wicri:level="1"><nlm:aff id="Aff10"><institution-wrap><institution-id institution-id-type="ISNI">0000 0000 8853 2677</institution-id><institution-id institution-id-type="GRID">grid.5361.1</institution-id><institution>Department of Pediatrics,</institution><institution>Medical University Innsbruck,</institution></institution-wrap>Innsbruck, Austria</nlm:aff><country xml:lang="fr">Autriche</country><wicri:regionArea>Innsbruck</wicri:regionArea></affiliation></author><author><name sortKey="Benseler, Susanne M" sort="Benseler, Susanne M" uniqKey="Benseler S" first="Susanne M." last="Benseler">Susanne M. Benseler</name><affiliation wicri:level="1"><nlm:aff id="Aff1"><institution-wrap><institution-id institution-id-type="ISNI">0000 0001 0196 8249</institution-id><institution-id institution-id-type="GRID">grid.411544.1</institution-id><institution>Department of Pediatric Rheumatology, autoinflammation reference centre Tuebingen (arcT),</institution><institution>University Children’s Hospital Tuebingen,</institution></institution-wrap>Tuebingen, Germany</nlm:aff><country xml:lang="fr">Allemagne</country><wicri:regionArea>Tuebingen</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="Aff11"><institution-wrap><institution-id institution-id-type="ISNI">0000 0004 1936 7697</institution-id><institution-id institution-id-type="GRID">grid.22072.35</institution-id><institution>Rheumatology, Department of Pediatrics, Alberta Children’s Hospital, Alberta Children’s Hospital Research Institute, Cumming School of Medicine,</institution><institution>University of Calgary,</institution></institution-wrap>Calgary, Canada</nlm:aff><country xml:lang="fr">Canada</country><wicri:regionArea>Calgary</wicri:regionArea></affiliation></author><author><name sortKey="Kuemmerle Deschner, Jasmin B" sort="Kuemmerle Deschner, Jasmin B" uniqKey="Kuemmerle Deschner J" first="Jasmin B." last="Kuemmerle-Deschner">Jasmin B. Kuemmerle-Deschner</name><affiliation wicri:level="1"><nlm:aff id="Aff1"><institution-wrap><institution-id institution-id-type="ISNI">0000 0001 0196 8249</institution-id><institution-id institution-id-type="GRID">grid.411544.1</institution-id><institution>Department of Pediatric Rheumatology, autoinflammation reference centre Tuebingen (arcT),</institution><institution>University Children’s Hospital Tuebingen,</institution></institution-wrap>Tuebingen, Germany</nlm:aff><country xml:lang="fr">Allemagne</country><wicri:regionArea>Tuebingen</wicri:regionArea></affiliation></author></analytic><series><title level="j">Pediatric Rheumatology Online Journal</title><idno type="eISSN">1546-0096</idno><imprint><date when="2020">2020</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><sec><title>Background</title><p id="Par1">Rare autoinflammatory diseases (AIDs) including Cryopyrin-Associated Periodic Syndrome (CAPS), Tumor Necrosis Receptor-Associated Periodic Syndrome (TRAPS) and Mevalonate Kinase Deficiency Syndrome (MKD)/ Hyper-IgD Syndrome (HIDS) are genetically defined and characterized by recurrent fever episodes and inflammatory organ manifestations. Early diagnosis and early start of effective therapies control the inflammation and prevent organ damage. The PRO-KIND initiative of the German Society of Pediatric Rheumatology (GKJR) aims to harmonize the diagnosis and management of children with rheumatic diseases nationally. The task of the PRO-KIND CAPS/TRAPS/MKD/HIDS working group was to develop evidence-based, consensus diagnosis and management protocols including the first AID treat-to-target strategies.</p></sec><sec><title>Methods</title><p id="Par2">The national CAPS/TRAPS/MKD/HIDS expert working group was established, defined its aims and conducted a comprehensive literature review synthesising the recent (2013 to 2018) published evidence including all available recommendations for diagnosis and management. General and disease-specific statements were anchored in the 2015 SHARE recommendations. An iterative expert review process discussed, adapted and refined these statements. Ultimately the GKJR membership vetted the proposed consensus statements, agreement of 80% was mandatory for inclusion. The approved statements were integrated into three disease specific consensus treatment plans (CTPs). These were developed to enable the implementation of evidence-based, standardized care into clinical practice.</p></sec><sec><title>Results</title><p id="Par3">The CAPS/TRAPS/MKD/HIDS expert working group of 12 German and Austrian paediatric rheumatologists completed the evidence synthesis and modified a total of 38 statements based on the SHARE recommendation framework. In iterative reviews 36 reached the mandatory agreement threshold of 80% in the final GKJR member survey. These included 9 overarching principles and 27 disease-specific statements (7 for CAPS, 11 TRAPS, 9 MKD/HIDS). A diagnostic algorithm was established based on the synthesized evidence. Statements were integrated into diagnosis- and disease activity specific treat-to-target CTPs for CAPS, TRAPS and MKD/HIDS.</p></sec><sec><title>Conclusions</title><p id="Par4">The PRO-KIND CAPS/TRAPS/MKD/HIDS working group established the first evidence-based, actionable treat-to-target consensus treatment plans for three rare hereditary autoinflammatory diseases. These provide a path to a rapid evaluation, effective control of disease activity and tailored adjustment of therapies. 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Heijstek</name></author><author><name sortKey="Ott De Bruin, Lm" uniqKey="Ott De Bruin L">LM Ott de Bruin</name></author><author><name sortKey="Bijl, M" uniqKey="Bijl M">M Bijl</name></author><author><name sortKey="Borrow, R" uniqKey="Borrow R">R Borrow</name></author><author><name sortKey="Van Der Klis, F" uniqKey="Van Der Klis F">F van der Klis</name></author><author><name sortKey="Kone Paut, I" uniqKey="Kone Paut I">I Kone-Paut</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Heijstek, Mw" uniqKey="Heijstek M">MW Heijstek</name></author><author><name sortKey="Ott De Bruin, Lm" uniqKey="Ott De Bruin L">LM Ott de Bruin</name></author><author><name sortKey="Borrow, R" uniqKey="Borrow R">R Borrow</name></author><author><name sortKey="Van Der Klis, F" uniqKey="Van Der Klis F">F van der Klis</name></author><author><name sortKey="Kone Paut, I" uniqKey="Kone Paut I">I Kone-Paut</name></author><author><name sortKey="Fasth, A" uniqKey="Fasth A">A Fasth</name></author></analytic></biblStruct></listBibl></div1></back></TEI><affiliations><list><country><li>Allemagne</li><li>Autriche</li><li>Canada</li></country><region><li>District de Cologne</li><li>District de Dresde</li><li>Rhénanie-du-Nord-Westphalie</li><li>Saxe (Land)</li></region><settlement><li>Dresde</li><li>Sankt Augustin</li></settlement></list><tree><country name="Allemagne"><noRegion><name sortKey="Hansmann, Sandra" sort="Hansmann, Sandra" uniqKey="Hansmann S" first="Sandra" last="Hansmann">Sandra Hansmann</name></noRegion><name sortKey="Benseler, Susanne M" sort="Benseler, Susanne M" uniqKey="Benseler S" first="Susanne M." last="Benseler">Susanne M. Benseler</name><name sortKey="Erbis, Gabi" sort="Erbis, Gabi" uniqKey="Erbis G" first="Gabi" last="Erbis">Gabi Erbis</name><name sortKey="Holzinger, Dirk" sort="Holzinger, Dirk" uniqKey="Holzinger D" first="Dirk" last="Holzinger">Dirk Holzinger</name><name sortKey="Horneff, Gerd" sort="Horneff, Gerd" uniqKey="Horneff G" first="Gerd" last="Horneff">Gerd Horneff</name><name sortKey="Jansson, Annette F" sort="Jansson, Annette F" uniqKey="Jansson A" first="Annette F." last="Jansson">Annette F. Jansson</name><name sortKey="Kuemmerle Deschner, Jasmin B" sort="Kuemmerle Deschner, Jasmin B" uniqKey="Kuemmerle Deschner J" first="Jasmin B." last="Kuemmerle-Deschner">Jasmin B. Kuemmerle-Deschner</name><name sortKey="Lainka, Elke" sort="Lainka, Elke" uniqKey="Lainka E" first="Elke" last="Lainka">Elke Lainka</name><name sortKey="Prelog, Martina" sort="Prelog, Martina" uniqKey="Prelog M" first="Martina" last="Prelog">Martina Prelog</name><name sortKey="Rieber, Nikolaus" sort="Rieber, Nikolaus" uniqKey="Rieber N" first="Nikolaus" last="Rieber">Nikolaus Rieber</name><name sortKey="Rieber, Nikolaus" sort="Rieber, Nikolaus" uniqKey="Rieber N" first="Nikolaus" last="Rieber">Nikolaus Rieber</name><name sortKey="Rosen Wolff, Angela" sort="Rosen Wolff, Angela" uniqKey="Rosen Wolff A" first="Angela" last="Rösen-Wolff">Angela Rösen-Wolff</name></country><country name="Autriche"><noRegion><name sortKey="Brunner, Juergen" sort="Brunner, Juergen" uniqKey="Brunner J" first="Juergen" last="Brunner">Juergen Brunner</name></noRegion></country><country name="Canada"><noRegion><name sortKey="Benseler, Susanne M" sort="Benseler, Susanne M" uniqKey="Benseler S" first="Susanne M." last="Benseler">Susanne M. Benseler</name></noRegion></country></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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