Identifying quality of life domains and facets affected in relapsing polychondritis: a qualitative analysis for the development of a disease-specific health-related quality of life instrument.
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| Title: | Identifying quality of life domains and facets affected in relapsing polychondritis: a qualitative analysis for the development of a disease-specific health-related quality of life instrument. |
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| Authors: | Mertz P; Sorbonne université, Hôpital Tenon, DMU3ID APHP, ERN RITA, Paris, France.; Centre de référence des maladies auto-inflammatoires et de l'amylose inflammatoire (CEREMAIA), Paris, France.; Centre hospitalier de Versailles, le Chesnay, 78150, France., Sander O; Department for Rheumatology and Hiller Research Centre for Rheumatology, University Hospital, Düsseldorf, Germany., Faria R; Unidade de Imunologia Clínica, Hospital de Santo António, Unidade Local de Saúde Santo António, Porto, Portugal., Crisafulli F; Rheumatology and Clinical Immunology Unit, ASST Spedali Civili of Brescia, Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy., Silva-Ribeiro S; Instituto Universitário de Lisboa, Lisboa, Portugal., Kawka L; Department of Rheumatology, National Reference Center for Rare Autoimmune Diseases (RESO), Hôpitaux Universitaires de Strasbourg, Strasbourg, France., Sztejkowski C; Department of Rheumatology, National Reference Center for Rare Autoimmune Diseases (RESO), Hôpitaux Universitaires de Strasbourg, Strasbourg, France., Düsing C; Department for Rheumatology and Hiller Research Centre for Rheumatology, University Hospital, Düsseldorf, Germany., Rose T; Klinik für Rheumatologie und Klinische Immunologie, Charité Universitätsmedizin Berlin, Charité Platz 1, 10117, Berlin, Germany., Lamas A; Unidade de Imunologia Clínica, Hospital de Santo António, Unidade Local de Saúde Santo António, Porto, Portugal., Vasconcelos C; Unidade de Imunologia Clínica, Hospital de Santo António, Unidade Local de Saúde Santo António, Porto, Portugal., Fontana G; Rheumatology and Clinical Immunology Unit, ASST Spedali Civili of Brescia, Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy., Semeraro P; Rheumatology and Clinical Immunology Unit, ASST Spedali Civili of Brescia, Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy., Neagu T; Department of Rheumatology, Emergency County Teaching Hospital, University of Medicine and Pharmacy Iuliu Hatieganu, Cluj-Napoca, Romania., Resteu M; Department of Rheumatology, Emergency County Teaching Hospital, University of Medicine and Pharmacy Iuliu Hatieganu, Cluj-Napoca, Romania., Damian L; Department of Rheumatology, Emergency County Teaching Hospital, University of Medicine and Pharmacy Iuliu Hatieganu, Cluj-Napoca, Romania., Pamfil C; Department of Rheumatology, Emergency County Teaching Hospital, University of Medicine and Pharmacy Iuliu Hatieganu, Cluj-Napoca, Romania., Bucsa C; ASPOR Association of Romanian Relapsing Polychondritis Patients & Iuliu Hațieganu University of Medicine and Pharmacy, Cluj-Napoca, Romania., Matthews LJ; Relapsing Polychondritis Awareness & Support, (relapsingpolychondritis.org), Worcester, UK., Devilliers H; Internal Medicine and Systemic Diseases Unit, University Hospital Centre Dijon, Dijon, France., Rednic S; Department of Rheumatology, Emergency County Teaching Hospital, University of Medicine and Pharmacy Iuliu Hatieganu, Cluj-Napoca, Romania., Arnaud L; Department of Rheumatology, National Reference Center for Rare Autoimmune Diseases (RESO), Hôpitaux Universitaires de Strasbourg, Strasbourg, France. Laurent.arnaud@chru-strasbourg.fr. |
| Source: | Orphanet journal of rare diseases [Orphanet J Rare Dis] 2026 Mar 11; Vol. 21 (1). Date of Electronic Publication: 2026 Mar 11. |
| Publication Type: | Journal Article |
| Journal Info: | Publisher: BioMed Central Country of Publication: England NLM ID: 101266602 Publication Model: Electronic Cited Medium: Internet ISSN: 1750-1172 (Electronic) Linking ISSN: 17501172 NLM ISO Abbreviation: Orphanet J Rare Dis Subsets: MEDLINE |
| Database: | MEDLINE Ultimate |
| FullText | Text: Availability: 0 |
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| Header | DbId: mdl DbLabel: MEDLINE Ultimate An: 41808205 AccessLevel: 2 PubType: Academic Journal PubTypeId: academicJournal PreciseRelevancyScore: 0 |
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| Items | – Name: Title Label: Title Group: Ti Data: Identifying quality of life domains and facets affected in relapsing polychondritis: a qualitative analysis for the development of a disease-specific health-related quality of life instrument. – Name: Author Label: Authors Group: Au Data: <searchLink fieldCode="AU" term="%22Mertz+P%22">Mertz P</searchLink>; Sorbonne université, Hôpital Tenon, DMU3ID APHP, ERN RITA, Paris, France.; Centre de référence des maladies auto-inflammatoires et de l'amylose inflammatoire (CEREMAIA), Paris, France.; Centre hospitalier de Versailles, le Chesnay, 78150, France.<br /><searchLink fieldCode="AU" term="%22Sander+O%22">Sander O</searchLink>; Department for Rheumatology and Hiller Research Centre for Rheumatology, University Hospital, Düsseldorf, Germany.<br /><searchLink fieldCode="AU" term="%22Faria+R%22">Faria R</searchLink>; Unidade de Imunologia Clínica, Hospital de Santo António, Unidade Local de Saúde Santo António, Porto, Portugal.<br /><searchLink fieldCode="AU" term="%22Crisafulli+F%22">Crisafulli F</searchLink>; Rheumatology and Clinical Immunology Unit, ASST Spedali Civili of Brescia, Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy.<br /><searchLink fieldCode="AU" term="%22Silva-Ribeiro+S%22">Silva-Ribeiro S</searchLink>; Instituto Universitário de Lisboa, Lisboa, Portugal.<br /><searchLink fieldCode="AU" term="%22Kawka+L%22">Kawka L</searchLink>; Department of Rheumatology, National Reference Center for Rare Autoimmune Diseases (RESO), Hôpitaux Universitaires de Strasbourg, Strasbourg, France.<br /><searchLink fieldCode="AU" term="%22Sztejkowski+C%22">Sztejkowski C</searchLink>; Department of Rheumatology, National Reference Center for Rare Autoimmune Diseases (RESO), Hôpitaux Universitaires de Strasbourg, Strasbourg, France.<br /><searchLink fieldCode="AU" term="%22Düsing+C%22">Düsing C</searchLink>; Department for Rheumatology and Hiller Research Centre for Rheumatology, University Hospital, Düsseldorf, Germany.<br /><searchLink fieldCode="AU" term="%22Rose+T%22">Rose T</searchLink>; Klinik für Rheumatologie und Klinische Immunologie, Charité Universitätsmedizin Berlin, Charité Platz 1, 10117, Berlin, Germany.<br /><searchLink fieldCode="AU" term="%22Lamas+A%22">Lamas A</searchLink>; Unidade de Imunologia Clínica, Hospital de Santo António, Unidade Local de Saúde Santo António, Porto, Portugal.<br /><searchLink fieldCode="AU" term="%22Vasconcelos+C%22">Vasconcelos C</searchLink>; Unidade de Imunologia Clínica, Hospital de Santo António, Unidade Local de Saúde Santo António, Porto, Portugal.<br /><searchLink fieldCode="AU" term="%22Fontana+G%22">Fontana G</searchLink>; Rheumatology and Clinical Immunology Unit, ASST Spedali Civili of Brescia, Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy.<br /><searchLink fieldCode="AU" term="%22Semeraro+P%22">Semeraro P</searchLink>; Rheumatology and Clinical Immunology Unit, ASST Spedali Civili of Brescia, Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy.<br /><searchLink fieldCode="AU" term="%22Neagu+T%22">Neagu T</searchLink>; Department of Rheumatology, Emergency County Teaching Hospital, University of Medicine and Pharmacy Iuliu Hatieganu, Cluj-Napoca, Romania.<br /><searchLink fieldCode="AU" term="%22Resteu+M%22">Resteu M</searchLink>; Department of Rheumatology, Emergency County Teaching Hospital, University of Medicine and Pharmacy Iuliu Hatieganu, Cluj-Napoca, Romania.<br /><searchLink fieldCode="AU" term="%22Damian+L%22">Damian L</searchLink>; Department of Rheumatology, Emergency County Teaching Hospital, University of Medicine and Pharmacy Iuliu Hatieganu, Cluj-Napoca, Romania.<br /><searchLink fieldCode="AU" term="%22Pamfil+C%22">Pamfil C</searchLink>; Department of Rheumatology, Emergency County Teaching Hospital, University of Medicine and Pharmacy Iuliu Hatieganu, Cluj-Napoca, Romania.<br /><searchLink fieldCode="AU" term="%22Bucsa+C%22">Bucsa C</searchLink>; ASPOR Association of Romanian Relapsing Polychondritis Patients & Iuliu Hațieganu University of Medicine and Pharmacy, Cluj-Napoca, Romania.<br /><searchLink fieldCode="AU" term="%22Matthews+LJ%22">Matthews LJ</searchLink>; Relapsing Polychondritis Awareness & Support, (relapsingpolychondritis.org), Worcester, UK.<br /><searchLink fieldCode="AU" term="%22Devilliers+H%22">Devilliers H</searchLink>; Internal Medicine and Systemic Diseases Unit, University Hospital Centre Dijon, Dijon, France.<br /><searchLink fieldCode="AU" term="%22Rednic+S%22">Rednic S</searchLink>; Department of Rheumatology, Emergency County Teaching Hospital, University of Medicine and Pharmacy Iuliu Hatieganu, Cluj-Napoca, Romania.<br /><searchLink fieldCode="AU" term="%22Arnaud+L%22">Arnaud L</searchLink>; Department of Rheumatology, National Reference Center for Rare Autoimmune Diseases (RESO), Hôpitaux Universitaires de Strasbourg, Strasbourg, France. Laurent.arnaud@chru-strasbourg.fr. – Name: TitleSource Label: Source Group: Src Data: <searchLink fieldCode="JN" term="%22101266602%22">Orphanet journal of rare diseases</searchLink> [Orphanet J Rare Dis] 2026 Mar 11; Vol. 21 (1). <i>Date of Electronic Publication: </i>2026 Mar 11. – Name: TypePub Label: Publication Type Group: TypPub Data: Journal Article – Name: TitleSource Label: Journal Info Group: Src Data: <i>Publisher: </i><searchLink fieldCode="PB" term="%22BioMed+Central%22">BioMed Central </searchLink><i>Country of Publication: </i>England <i>NLM ID: </i>101266602 <i>Publication Model: </i>Electronic <i>Cited Medium: </i>Internet <i>ISSN: </i>1750-1172 (Electronic) <i>Linking ISSN: </i><searchLink fieldCode="IS" term="%2217501172%22">17501172 </searchLink><i>NLM ISO Abbreviation: </i>Orphanet J Rare Dis <i>Subsets: </i>MEDLINE |
| PLink | https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=mdl&AN=41808205 |
| RecordInfo | BibRecord: BibEntity: Identifiers: – Type: doi Value: 10.1186/s13023-026-04297-3 Languages: – Code: eng Text: English Titles: – TitleFull: Identifying quality of life domains and facets affected in relapsing polychondritis: a qualitative analysis for the development of a disease-specific health-related quality of life instrument. Type: main BibRelationships: HasContributorRelationships: – PersonEntity: Name: NameFull: Mertz P – PersonEntity: Name: NameFull: Sander O – PersonEntity: Name: NameFull: Faria R – PersonEntity: Name: NameFull: Crisafulli F – PersonEntity: Name: NameFull: Silva-Ribeiro S – PersonEntity: Name: NameFull: Kawka L – PersonEntity: Name: NameFull: Sztejkowski C – PersonEntity: Name: NameFull: Düsing C – PersonEntity: Name: NameFull: Rose T – PersonEntity: Name: NameFull: Lamas A – PersonEntity: Name: NameFull: Vasconcelos C – PersonEntity: Name: NameFull: Fontana G – PersonEntity: Name: NameFull: Semeraro P – PersonEntity: Name: NameFull: Neagu T – PersonEntity: Name: NameFull: Resteu M – PersonEntity: Name: NameFull: Damian L – PersonEntity: Name: NameFull: Pamfil C – PersonEntity: Name: NameFull: Bucsa C – PersonEntity: Name: NameFull: Matthews LJ – PersonEntity: Name: NameFull: Devilliers H – PersonEntity: Name: NameFull: Rednic S – PersonEntity: Name: NameFull: Arnaud L IsPartOfRelationships: – BibEntity: Dates: – D: 11 M: 03 Text: 2026 Mar 11 Type: published Y: 2026 Identifiers: – Type: issn-electronic Value: 1750-1172 Numbering: – Type: volume Value: 21 – Type: issue Value: 1 Titles: – TitleFull: Orphanet journal of rare diseases Type: main |
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