Changing prognosis in paroxysmal nocturnal haemoglobinuria disease subcategories: an analysis of the International PNH Registry.
Identifieur interne : 001981 ( PubMed/Corpus ); précédent : 001980; suivant : 001982Changing prognosis in paroxysmal nocturnal haemoglobinuria disease subcategories: an analysis of the International PNH Registry.
Auteurs : G. Socié ; H. Schrezenmeier ; P. Muus ; I. Lisukov ; A. Röth ; A. Kulasekararaj ; J W Lee ; D. Araten ; A. Hill ; R. Brodsky ; A. Urbano-Ispizua ; J. Szer ; A. Wilson ; P. HillmenSource :
- Internal medicine journal [ 1445-5994 ] ; 2016.
English descriptors
- KwdEn :
- Adult, Anemia, Aplastic (epidemiology), Antibodies, Monoclonal, Humanized (therapeutic use), Cause of Death, Erythrocyte Transfusion, Female, France, Hemoglobinuria, Paroxysmal (classification), Hemoglobinuria, Paroxysmal (mortality), Hemoglobinuria, Paroxysmal (therapy), Humans, Incidence, Male, Middle Aged, Multivariate Analysis, Prognosis, Registries, Retrospective Studies, Risk Factors, Survival Analysis, Thrombosis (epidemiology).
- MESH :
- chemical , therapeutic use : Antibodies, Monoclonal, Humanized.
- classification : Hemoglobinuria, Paroxysmal.
- epidemiology : Anemia, Aplastic, Thrombosis.
- mortality : Hemoglobinuria, Paroxysmal.
- therapy : Hemoglobinuria, Paroxysmal.
- Adult, Cause of Death, Erythrocyte Transfusion, Female, France, Humans, Incidence, Male, Middle Aged, Multivariate Analysis, Prognosis, Registries, Retrospective Studies, Risk Factors, Survival Analysis.
Abstract
Paroxysmal nocturnal haemoglobinuria (PNH) is a rare disease. Although much progress has been made in the understanding of the pathophysiology of the disease, far less is known with respect to the clinical outcomes of patients with PNH. Few retrospective studies provide survival estimates, and even fewer have explored the clinical heterogeneity of the disease. Haemolytic and aplastic anaemia (AA) forms of the disease have been recognised as main disease categories, with the haemolytic form being associated with the worst prognosis by the largest studied cohort some years ago.
DOI: 10.1111/imj.13160
PubMed: 27305361
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pubmed:27305361Le document en format XML
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Schrezenmeier</name><affiliation><nlm:affiliation>Institute of Transfusion Medicine, University of Ulm Ulm and Institute of Clinical Transfusion Medicine and Immunogenetics, German Red Cross Blood Transfusion Service Baden-Württemberg-Hessen and University Hospital Ulm, Ulm, Germany.</nlm:affiliation></affiliation></author><author><name sortKey="Muus, P" sort="Muus, P" uniqKey="Muus P" first="P" last="Muus">P. Muus</name><affiliation><nlm:affiliation>Department of Hematology, Radboud UMC, Nijmegen, the Netherlands.</nlm:affiliation></affiliation></author><author><name sortKey="Lisukov, I" sort="Lisukov, I" uniqKey="Lisukov I" first="I" last="Lisukov">I. Lisukov</name><affiliation><nlm:affiliation>Institution of Children Hematology and Transplantation, St. Petersburg, Russia.</nlm:affiliation></affiliation></author><author><name sortKey="Roth, A" sort="Roth, A" uniqKey="Roth A" first="A" last="Röth">A. Röth</name><affiliation><nlm:affiliation>University Hospital Essen, Essen, Germany.</nlm:affiliation></affiliation></author><author><name sortKey="Kulasekararaj, A" sort="Kulasekararaj, A" uniqKey="Kulasekararaj A" first="A" last="Kulasekararaj">A. Kulasekararaj</name><affiliation><nlm:affiliation>Kings College Hospital, London, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Lee, J W" sort="Lee, J W" uniqKey="Lee J" first="J W" last="Lee">J W Lee</name><affiliation><nlm:affiliation>Seoul St. Mary's Hospital, Seoul, Korea.</nlm:affiliation></affiliation></author><author><name sortKey="Araten, D" sort="Araten, D" uniqKey="Araten D" first="D" last="Araten">D. Araten</name><affiliation><nlm:affiliation>Laura and Isaac Perlmutter Cancer Center, NYU Langone Medical Center, New York VA Medical Center, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Hill, A" sort="Hill, A" uniqKey="Hill A" first="A" last="Hill">A. 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Wilson</name><affiliation><nlm:affiliation>Alexion Pharmaceuticals, New Haven, Connecticut, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Hillmen, P" sort="Hillmen, P" uniqKey="Hillmen P" first="P" last="Hillmen">P. Hillmen</name><affiliation><nlm:affiliation>St James's University Hospital, Leeds, UK.</nlm:affiliation></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PubMed</idno><date when="2016">2016</date><idno type="RBID">pubmed:27305361</idno><idno type="pmid">27305361</idno><idno type="doi">10.1111/imj.13160</idno><idno type="wicri:Area/PubMed/Corpus">001981</idno><idno type="wicri:explorRef" wicri:stream="PubMed" wicri:step="Corpus" wicri:corpus="PubMed">001981</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en">Changing prognosis in paroxysmal nocturnal haemoglobinuria disease subcategories: an analysis of the International PNH Registry.</title><author><name sortKey="Socie, G" sort="Socie, G" uniqKey="Socie G" first="G" last="Socié">G. Socié</name><affiliation><nlm:affiliation>Hematology Transplantation, AP-HP, Hospital Saint Louis, University Paris VII Denis Diderot and Inserm UMR 1160, Paris, France. gerard.socie@sls.aphp.fr.</nlm:affiliation></affiliation></author><author><name sortKey="Schrezenmeier, H" sort="Schrezenmeier, H" uniqKey="Schrezenmeier H" first="H" last="Schrezenmeier">H. Schrezenmeier</name><affiliation><nlm:affiliation>Institute of Transfusion Medicine, University of Ulm Ulm and Institute of Clinical Transfusion Medicine and Immunogenetics, German Red Cross Blood Transfusion Service Baden-Württemberg-Hessen and University Hospital Ulm, Ulm, Germany.</nlm:affiliation></affiliation></author><author><name sortKey="Muus, P" sort="Muus, P" uniqKey="Muus P" first="P" last="Muus">P. Muus</name><affiliation><nlm:affiliation>Department of Hematology, Radboud UMC, Nijmegen, the Netherlands.</nlm:affiliation></affiliation></author><author><name sortKey="Lisukov, I" sort="Lisukov, I" uniqKey="Lisukov I" first="I" last="Lisukov">I. Lisukov</name><affiliation><nlm:affiliation>Institution of Children Hematology and Transplantation, St. Petersburg, Russia.</nlm:affiliation></affiliation></author><author><name sortKey="Roth, A" sort="Roth, A" uniqKey="Roth A" first="A" last="Röth">A. Röth</name><affiliation><nlm:affiliation>University Hospital Essen, Essen, Germany.</nlm:affiliation></affiliation></author><author><name sortKey="Kulasekararaj, A" sort="Kulasekararaj, A" uniqKey="Kulasekararaj A" first="A" last="Kulasekararaj">A. Kulasekararaj</name><affiliation><nlm:affiliation>Kings College Hospital, London, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Lee, J W" sort="Lee, J W" uniqKey="Lee J" first="J W" last="Lee">J W Lee</name><affiliation><nlm:affiliation>Seoul St. Mary's Hospital, Seoul, Korea.</nlm:affiliation></affiliation></author><author><name sortKey="Araten, D" sort="Araten, D" uniqKey="Araten D" first="D" last="Araten">D. Araten</name><affiliation><nlm:affiliation>Laura and Isaac Perlmutter Cancer Center, NYU Langone Medical Center, New York VA Medical Center, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Hill, A" sort="Hill, A" uniqKey="Hill A" first="A" last="Hill">A. Hill</name><affiliation><nlm:affiliation>St James's University Hospital, Leeds, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Brodsky, R" sort="Brodsky, R" uniqKey="Brodsky R" first="R" last="Brodsky">R. Brodsky</name><affiliation><nlm:affiliation>Johns Hopkins University Medical Center, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Urbano Ispizua, A" sort="Urbano Ispizua, A" uniqKey="Urbano Ispizua A" first="A" last="Urbano-Ispizua">A. Urbano-Ispizua</name><affiliation><nlm:affiliation>Hospital Clínic Barcelona, Barcelona, Spain.</nlm:affiliation></affiliation></author><author><name sortKey="Szer, J" sort="Szer, J" uniqKey="Szer J" first="J" last="Szer">J. Szer</name><affiliation><nlm:affiliation>Royal Melbourne Hospital, Melbourne, Victoria, Australia.</nlm:affiliation></affiliation></author><author><name sortKey="Wilson, A" sort="Wilson, A" uniqKey="Wilson A" first="A" last="Wilson">A. Wilson</name><affiliation><nlm:affiliation>Alexion Pharmaceuticals, New Haven, Connecticut, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Hillmen, P" sort="Hillmen, P" uniqKey="Hillmen P" first="P" last="Hillmen">P. Hillmen</name><affiliation><nlm:affiliation>St James's University Hospital, Leeds, UK.</nlm:affiliation></affiliation></author></analytic><series><title level="j">Internal medicine journal</title><idno type="eISSN">1445-5994</idno><imprint><date when="2016" type="published">2016</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Adult</term><term>Anemia, Aplastic (epidemiology)</term><term>Antibodies, Monoclonal, Humanized (therapeutic use)</term><term>Cause of Death</term><term>Erythrocyte Transfusion</term><term>Female</term><term>France</term><term>Hemoglobinuria, Paroxysmal (classification)</term><term>Hemoglobinuria, Paroxysmal (mortality)</term><term>Hemoglobinuria, Paroxysmal (therapy)</term><term>Humans</term><term>Incidence</term><term>Male</term><term>Middle Aged</term><term>Multivariate Analysis</term><term>Prognosis</term><term>Registries</term><term>Retrospective Studies</term><term>Risk Factors</term><term>Survival Analysis</term><term>Thrombosis (epidemiology)</term></keywords><keywords scheme="MESH" type="chemical" qualifier="therapeutic use" xml:lang="en"><term>Antibodies, Monoclonal, Humanized</term></keywords><keywords scheme="MESH" qualifier="classification" xml:lang="en"><term>Hemoglobinuria, Paroxysmal</term></keywords><keywords scheme="MESH" qualifier="epidemiology" xml:lang="en"><term>Anemia, Aplastic</term><term>Thrombosis</term></keywords><keywords scheme="MESH" qualifier="mortality" xml:lang="en"><term>Hemoglobinuria, Paroxysmal</term></keywords><keywords scheme="MESH" qualifier="therapy" xml:lang="en"><term>Hemoglobinuria, Paroxysmal</term></keywords><keywords scheme="MESH" xml:lang="en"><term>Adult</term><term>Cause of Death</term><term>Erythrocyte Transfusion</term><term>Female</term><term>France</term><term>Humans</term><term>Incidence</term><term>Male</term><term>Middle Aged</term><term>Multivariate Analysis</term><term>Prognosis</term><term>Registries</term><term>Retrospective Studies</term><term>Risk Factors</term><term>Survival Analysis</term></keywords></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">Paroxysmal nocturnal haemoglobinuria (PNH) is a rare disease. Although much progress has been made in the understanding of the pathophysiology of the disease, far less is known with respect to the clinical outcomes of patients with PNH. Few retrospective studies provide survival estimates, and even fewer have explored the clinical heterogeneity of the disease. Haemolytic and aplastic anaemia (AA) forms of the disease have been recognised as main disease categories, with the haemolytic form being associated with the worst prognosis by the largest studied cohort some years ago.</div></front></TEI><pubmed><MedlineCitation Status="MEDLINE" Owner="NLM"><PMID Version="1">27305361</PMID><DateCreated><Year>2016</Year><Month>09</Month><Day>16</Day></DateCreated><DateCompleted><Year>2017</Year><Month>08</Month><Day>24</Day></DateCompleted><DateRevised><Year>2017</Year><Month>08</Month><Day>24</Day></DateRevised><Article PubModel="Print"><Journal><ISSN IssnType="Electronic">1445-5994</ISSN><JournalIssue CitedMedium="Internet"><Volume>46</Volume><Issue>9</Issue><PubDate><Year>2016</Year><Month>Sep</Month></PubDate></JournalIssue><Title>Internal medicine journal</Title><ISOAbbreviation>Intern Med J</ISOAbbreviation></Journal><ArticleTitle>Changing prognosis in paroxysmal nocturnal haemoglobinuria disease subcategories: an analysis of the International PNH Registry.</ArticleTitle><Pagination><MedlinePgn>1044-53</MedlinePgn></Pagination><ELocationID EIdType="doi" ValidYN="Y">10.1111/imj.13160</ELocationID><Abstract><AbstractText Label="BACKGROUND" NlmCategory="BACKGROUND">Paroxysmal nocturnal haemoglobinuria (PNH) is a rare disease. Although much progress has been made in the understanding of the pathophysiology of the disease, far less is known with respect to the clinical outcomes of patients with PNH. Few retrospective studies provide survival estimates, and even fewer have explored the clinical heterogeneity of the disease. Haemolytic and aplastic anaemia (AA) forms of the disease have been recognised as main disease categories, with the haemolytic form being associated with the worst prognosis by the largest studied cohort some years ago.</AbstractText><AbstractText Label="AIMS" NlmCategory="OBJECTIVE">To describe mortality and causes of death in PNH overall and by PNH classification and to evaluate risk factors associated with mortality.</AbstractText><AbstractText Label="METHODS" NlmCategory="METHODS">We analysed data of 2356 patients enrolled in the International PNH Registry with multivariate analyses, using time-dependent covariates. Patients were classified into haemolytic, AA/PNH syndrome or intermediate PNH.</AbstractText><AbstractText Label="RESULTS" NlmCategory="RESULTS">Overall, 122 (5.2%) patients died after enrolment, the incidence according to subcategories being 5.1, 11.7, 2.0 and 4.8% for patients with haemolytic PNH, AA-PNH, intermediate and insufficient data respectively. Older age and decreased performance status also affected survival in multivariate analysis. Improved outcome of patients with haemolytic PNH suggests that eculizumab treatment in PNH may be associated with improved survival.</AbstractText><AbstractText Label="CONCLUSION" NlmCategory="CONCLUSIONS">A detailed analysis of clinical presentations and causes of death in patients with PNH, overall and by disease subcategories, provide evidence that in the current era, patients with haemolytic PNH are no longer those who harbour the worst prognosis. This finding differs sharply from what has been previously reported.</AbstractText><CopyrightInformation>© 2016 Royal Australasian College of Physicians.</CopyrightInformation></Abstract><AuthorList CompleteYN="Y"><Author ValidYN="Y"><LastName>Socié</LastName><ForeName>G</ForeName><Initials>G</Initials><AffiliationInfo><Affiliation>Hematology Transplantation, AP-HP, Hospital Saint Louis, University Paris VII Denis Diderot and Inserm UMR 1160, Paris, France. gerard.socie@sls.aphp.fr.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Schrezenmeier</LastName><ForeName>H</ForeName><Initials>H</Initials><AffiliationInfo><Affiliation>Institute of Transfusion Medicine, University of Ulm Ulm and Institute of Clinical Transfusion Medicine and Immunogenetics, German Red Cross Blood Transfusion Service Baden-Württemberg-Hessen and University Hospital Ulm, Ulm, Germany.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Muus</LastName><ForeName>P</ForeName><Initials>P</Initials><AffiliationInfo><Affiliation>Department of Hematology, Radboud UMC, Nijmegen, the Netherlands.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Lisukov</LastName><ForeName>I</ForeName><Initials>I</Initials><AffiliationInfo><Affiliation>Institution of Children Hematology and Transplantation, St. Petersburg, Russia.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Röth</LastName><ForeName>A</ForeName><Initials>A</Initials><AffiliationInfo><Affiliation>University Hospital Essen, Essen, Germany.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Kulasekararaj</LastName><ForeName>A</ForeName><Initials>A</Initials><AffiliationInfo><Affiliation>Kings College Hospital, London, UK.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Lee</LastName><ForeName>J W</ForeName><Initials>JW</Initials><AffiliationInfo><Affiliation>Seoul St. Mary's Hospital, Seoul, Korea.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Araten</LastName><ForeName>D</ForeName><Initials>D</Initials><AffiliationInfo><Affiliation>Laura and Isaac Perlmutter Cancer Center, NYU Langone Medical Center, New York VA Medical Center, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Hill</LastName><ForeName>A</ForeName><Initials>A</Initials><AffiliationInfo><Affiliation>St James's University Hospital, Leeds, UK.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Brodsky</LastName><ForeName>R</ForeName><Initials>R</Initials><AffiliationInfo><Affiliation>Johns Hopkins University Medical Center, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Urbano-Ispizua</LastName><ForeName>A</ForeName><Initials>A</Initials><AffiliationInfo><Affiliation>Hospital Clínic Barcelona, Barcelona, Spain.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Szer</LastName><ForeName>J</ForeName><Initials>J</Initials><AffiliationInfo><Affiliation>Royal Melbourne Hospital, Melbourne, Victoria, Australia.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Wilson</LastName><ForeName>A</ForeName><Initials>A</Initials><AffiliationInfo><Affiliation>Alexion Pharmaceuticals, New Haven, Connecticut, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Hillmen</LastName><ForeName>P</ForeName><Initials>P</Initials><AffiliationInfo><Affiliation>St James's University Hospital, Leeds, UK.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><CollectiveName>PNH Registry</CollectiveName></Author></AuthorList><Language>eng</Language><PublicationTypeList><PublicationType UI="D016428">Journal Article</PublicationType></PublicationTypeList></Article><MedlineJournalInfo><Country>Australia</Country><MedlineTA>Intern Med J</MedlineTA><NlmUniqueID>101092952</NlmUniqueID><ISSNLinking>1444-0903</ISSNLinking></MedlineJournalInfo><ChemicalList><Chemical><RegistryNumber>0</RegistryNumber><NameOfSubstance UI="D061067">Antibodies, Monoclonal, Humanized</NameOfSubstance></Chemical><Chemical><RegistryNumber>A3ULP0F556</RegistryNumber><NameOfSubstance UI="C481642">eculizumab</NameOfSubstance></Chemical></ChemicalList><CitationSubset>IM</CitationSubset><MeshHeadingList><MeshHeading><DescriptorName UI="D000328" MajorTopicYN="N">Adult</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D000741" MajorTopicYN="N">Anemia, Aplastic</DescriptorName><QualifierName UI="Q000453" MajorTopicYN="Y">epidemiology</QualifierName></MeshHeading><MeshHeading><DescriptorName UI="D061067" MajorTopicYN="N">Antibodies, Monoclonal, Humanized</DescriptorName><QualifierName UI="Q000627" MajorTopicYN="Y">therapeutic use</QualifierName></MeshHeading><MeshHeading><DescriptorName UI="D002423" MajorTopicYN="N">Cause of Death</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D017707" MajorTopicYN="N">Erythrocyte Transfusion</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D005260" MajorTopicYN="N">Female</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D005602" MajorTopicYN="N">France</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D006457" MajorTopicYN="N">Hemoglobinuria, Paroxysmal</DescriptorName><QualifierName UI="Q000145" MajorTopicYN="N">classification</QualifierName><QualifierName UI="Q000401" MajorTopicYN="Y">mortality</QualifierName><QualifierName UI="Q000628" MajorTopicYN="Y">therapy</QualifierName></MeshHeading><MeshHeading><DescriptorName UI="D006801" MajorTopicYN="N">Humans</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D015994" MajorTopicYN="N">Incidence</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D008297" MajorTopicYN="N">Male</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D008875" MajorTopicYN="N">Middle Aged</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D015999" MajorTopicYN="N">Multivariate Analysis</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D011379" MajorTopicYN="N">Prognosis</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D012042" MajorTopicYN="N">Registries</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D012189" MajorTopicYN="N">Retrospective Studies</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D012307" MajorTopicYN="N">Risk Factors</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D016019" MajorTopicYN="N">Survival Analysis</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D013927" MajorTopicYN="N">Thrombosis</DescriptorName><QualifierName UI="Q000453" MajorTopicYN="Y">epidemiology</QualifierName></MeshHeading></MeshHeadingList><KeywordList Owner="NOTNLM"><Keyword MajorTopicYN="N">PNH</Keyword><Keyword MajorTopicYN="N">PNH Registry</Keyword><Keyword MajorTopicYN="N">causes of death</Keyword></KeywordList></MedlineCitation><PubmedData><History><PubMedPubDate PubStatus="received"><Year>2016</Year><Month>03</Month><Day>15</Day></PubMedPubDate><PubMedPubDate PubStatus="revised"><Year>2016</Year><Month>05</Month><Day>17</Day></PubMedPubDate><PubMedPubDate PubStatus="accepted"><Year>2016</Year><Month>05</Month><Day>29</Day></PubMedPubDate><PubMedPubDate PubStatus="entrez"><Year>2016</Year><Month>6</Month><Day>16</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate><PubMedPubDate PubStatus="pubmed"><Year>2016</Year><Month>6</Month><Day>16</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate><PubMedPubDate PubStatus="medline"><Year>2017</Year><Month>8</Month><Day>25</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate></History><PublicationStatus>ppublish</PublicationStatus><ArticleIdList><ArticleId IdType="pubmed">27305361</ArticleId><ArticleId 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