Survival, causes of death, and cardiovascular events in patients with Marfan syndrome
Background To explore survival, causes of death, and the prevalence of cardiovascular events in a Norwegian Marfan syndrome (MFS) cohort. MFS is a heritable connective tissue disorder associated with reduced life expectancy–primarily due to aortic pathology. Methods A follow‐up study of 84 MFS adult...
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| Veröffentlicht in: | Molecular genetics & genomic medicine 2018-11, Vol.6 (6), p.1114-1123 |
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| creator | Vanem, Thy Thy Geiran, Odd Ragnar Krohg‐Sørensen, Kirsten Røe, Cecilie Paus, Benedicte Rand‐Hendriksen, Svend |
| description | Background
To explore survival, causes of death, and the prevalence of cardiovascular events in a Norwegian Marfan syndrome (MFS) cohort. MFS is a heritable connective tissue disorder associated with reduced life expectancy–primarily due to aortic pathology.
Methods
A follow‐up study of 84 MFS adults, initially investigated in 2003–2004. In 2014–2015, 16 were deceased, 47 of 68 survivors consented to new clinical investigations. Analyses of events were performed for 47 survivors and 16 deceased at follow‐up. Standardized mortality ratios (SMR), using the mortality rate of the Norwegian population as reference, were calculated for all 84 and calculated for men and women separately. Causes of death and information on cardiovascular events were retrieved from death certificates and medical records.
Results
Standardized mortality ratios (95% confidence interval): for the whole cohort: 5.24 (3.00–8.51); for men: 8.20 (3.54–16.16); for women: 3.85 (1.66–7.58). Cardiovascular causes were found in 11 of 16 deceased, eight of these related to aortic pathology. Cancer was the cause of death in three patients. At follow‐up, 51% had new cardiovascular events; 59% had undergone aortic surgery. Men experienced aortic events at younger age than women. 32% of the survivors were not followed‐up as recommended.
Conclusion
Life expectancy is reduced in this MFS cohort compared to the Norwegian population. Cardiovascular complications develop throughout life, particularly aortic pathology, the major cause of death in MFS. Death and aortic pathology seem to occur earlier in men. There is a need to improve follow‐up according to guidelines.
Marfan syndrome (MFS) is a heritable connective tissue disorder associated with reduced life expectancy. We wanted to explore survival, causes of death, and the prevalence of cardiovascular events in a Norwegian MFS cohort of 84 adults. Although medical and surgical treatments have improved in the last decades, life expectancy is still reduced in this MFS cohort compared to the Norwegian population. |
| doi_str_mv | 10.1002/mgg3.489 |
| format | Article |
| fullrecord | <record><control><sourceid>proquest_pubme</sourceid><recordid>TN_cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_6305663</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>2130058819</sourcerecordid><originalsourceid>FETCH-LOGICAL-c4909-c312e33592831f871c4984843446e42a3494b636f47309a167d339bd9cfa82cf3</originalsourceid><addsrcrecordid>eNp1kUFvFCEUx4nR2KY28RMoiRcPnQo8hoGLiWnq1qRND9ozYRlml2YGVpiZZr99Wbet1aRceHn88uPBH6H3lJxSQtiXYbWCUy7VK3TIgPFKMaFeP6sP0HHOt6QsKTkVzVt0AAQUKEkO0c3PKc1-Nv0JtmbKLuPY4daZcX2CTWhLM7U-zibbqTcJu9mFMWMf8MaM_k9958c1vjKpMwHnbWhTHNw79KYzfXbHD_sRuvl-_uvsorq8Xvw4-3ZZWa6IqixQ5gBqxSTQTja0tCWXHDgXjjMDXPGlANHxBogyZfYWQC1bZTsjme3gCH3dezfTcnCtLQMl0-tN8oNJWx2N1_-eBL_WqzhrAaQWAorg415gk8-jDzrEZDQlsma6obWUhfj8cEWKvyeXRz34bF3fm-DilDWjQEgBqSrop__Q2zilUD6gUIIwVtes-Su0KeacXPc0LiV6F6jeBapLoAX98Px5T-BjfAWo9sCd7932RZG-WixgJ7wHV6enKg</addsrcrecordid><sourcetype>Open Access Repository</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>2160225527</pqid></control><display><type>article</type><title>Survival, causes of death, and cardiovascular events in patients with Marfan syndrome</title><source>MEDLINE</source><source>NORA - Norwegian Open Research Archives</source><source>Wiley-Blackwell Open Access Titles</source><source>DOAJ Directory of Open Access Journals</source><source>Wiley Online Library Journals Frontfile Complete</source><source>Elektronische Zeitschriftenbibliothek - Frei zugängliche E-Journals</source><source>PubMed Central</source><creator>Vanem, Thy Thy ; Geiran, Odd Ragnar ; Krohg‐Sørensen, Kirsten ; Røe, Cecilie ; Paus, Benedicte ; Rand‐Hendriksen, Svend</creator><creatorcontrib>Vanem, Thy Thy ; Geiran, Odd Ragnar ; Krohg‐Sørensen, Kirsten ; Røe, Cecilie ; Paus, Benedicte ; Rand‐Hendriksen, Svend</creatorcontrib><description>Background
To explore survival, causes of death, and the prevalence of cardiovascular events in a Norwegian Marfan syndrome (MFS) cohort. MFS is a heritable connective tissue disorder associated with reduced life expectancy–primarily due to aortic pathology.
Methods
A follow‐up study of 84 MFS adults, initially investigated in 2003–2004. In 2014–2015, 16 were deceased, 47 of 68 survivors consented to new clinical investigations. Analyses of events were performed for 47 survivors and 16 deceased at follow‐up. Standardized mortality ratios (SMR), using the mortality rate of the Norwegian population as reference, were calculated for all 84 and calculated for men and women separately. Causes of death and information on cardiovascular events were retrieved from death certificates and medical records.
Results
Standardized mortality ratios (95% confidence interval): for the whole cohort: 5.24 (3.00–8.51); for men: 8.20 (3.54–16.16); for women: 3.85 (1.66–7.58). Cardiovascular causes were found in 11 of 16 deceased, eight of these related to aortic pathology. Cancer was the cause of death in three patients. At follow‐up, 51% had new cardiovascular events; 59% had undergone aortic surgery. Men experienced aortic events at younger age than women. 32% of the survivors were not followed‐up as recommended.
Conclusion
Life expectancy is reduced in this MFS cohort compared to the Norwegian population. Cardiovascular complications develop throughout life, particularly aortic pathology, the major cause of death in MFS. Death and aortic pathology seem to occur earlier in men. There is a need to improve follow‐up according to guidelines.
Marfan syndrome (MFS) is a heritable connective tissue disorder associated with reduced life expectancy. We wanted to explore survival, causes of death, and the prevalence of cardiovascular events in a Norwegian MFS cohort of 84 adults. Although medical and surgical treatments have improved in the last decades, life expectancy is still reduced in this MFS cohort compared to the Norwegian population.</description><identifier>ISSN: 2324-9269</identifier><identifier>EISSN: 2324-9269</identifier><identifier>DOI: 10.1002/mgg3.489</identifier><identifier>PMID: 30393980</identifier><language>eng</language><publisher>United States: John Wiley & Sons, Inc</publisher><subject>Adult ; Adults ; Aged ; Aorta ; Aorta - pathology ; aortic surgery ; Cancer ; cardiovascular events ; Cause of Death ; causes of death ; Confidence intervals ; Connective tissues ; Death ; Female ; Health risk assessment ; Humans ; Life expectancy ; Life span ; Male ; Marfan syndrome ; Marfan Syndrome - epidemiology ; Marfan Syndrome - mortality ; Marfan Syndrome - pathology ; Mathematical analysis ; Medical records ; Men ; Middle Aged ; Mortality ; Norway ; Original ; Pathology ; Patients ; Surgery ; Survival ; Women</subject><ispartof>Molecular genetics & genomic medicine, 2018-11, Vol.6 (6), p.1114-1123</ispartof><rights>2018 The Authors. published by Wiley Periodicals, Inc.</rights><rights>2018 The Authors. Molecular Genetics & Genomic Medicine published by Wiley Periodicals, Inc.</rights><rights>2018. This work is published under http://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><rights>info:eu-repo/semantics/openAccess</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c4909-c312e33592831f871c4984843446e42a3494b636f47309a167d339bd9cfa82cf3</citedby><cites>FETCH-LOGICAL-c4909-c312e33592831f871c4984843446e42a3494b636f47309a167d339bd9cfa82cf3</cites><orcidid>0000-0003-2792-8864</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC6305663/pdf/$$EPDF$$P50$$Gpubmedcentral$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC6305663/$$EHTML$$P50$$Gpubmedcentral$$Hfree_for_read</linktohtml><link.rule.ids>230,314,723,776,780,860,881,1411,11541,26544,27901,27902,45550,45551,46027,46451,53766,53768</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/30393980$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Vanem, Thy Thy</creatorcontrib><creatorcontrib>Geiran, Odd Ragnar</creatorcontrib><creatorcontrib>Krohg‐Sørensen, Kirsten</creatorcontrib><creatorcontrib>Røe, Cecilie</creatorcontrib><creatorcontrib>Paus, Benedicte</creatorcontrib><creatorcontrib>Rand‐Hendriksen, Svend</creatorcontrib><title>Survival, causes of death, and cardiovascular events in patients with Marfan syndrome</title><title>Molecular genetics & genomic medicine</title><addtitle>Mol Genet Genomic Med</addtitle><description>Background
To explore survival, causes of death, and the prevalence of cardiovascular events in a Norwegian Marfan syndrome (MFS) cohort. MFS is a heritable connective tissue disorder associated with reduced life expectancy–primarily due to aortic pathology.
Methods
A follow‐up study of 84 MFS adults, initially investigated in 2003–2004. In 2014–2015, 16 were deceased, 47 of 68 survivors consented to new clinical investigations. Analyses of events were performed for 47 survivors and 16 deceased at follow‐up. Standardized mortality ratios (SMR), using the mortality rate of the Norwegian population as reference, were calculated for all 84 and calculated for men and women separately. Causes of death and information on cardiovascular events were retrieved from death certificates and medical records.
Results
Standardized mortality ratios (95% confidence interval): for the whole cohort: 5.24 (3.00–8.51); for men: 8.20 (3.54–16.16); for women: 3.85 (1.66–7.58). Cardiovascular causes were found in 11 of 16 deceased, eight of these related to aortic pathology. Cancer was the cause of death in three patients. At follow‐up, 51% had new cardiovascular events; 59% had undergone aortic surgery. Men experienced aortic events at younger age than women. 32% of the survivors were not followed‐up as recommended.
Conclusion
Life expectancy is reduced in this MFS cohort compared to the Norwegian population. Cardiovascular complications develop throughout life, particularly aortic pathology, the major cause of death in MFS. Death and aortic pathology seem to occur earlier in men. There is a need to improve follow‐up according to guidelines.
Marfan syndrome (MFS) is a heritable connective tissue disorder associated with reduced life expectancy. We wanted to explore survival, causes of death, and the prevalence of cardiovascular events in a Norwegian MFS cohort of 84 adults. Although medical and surgical treatments have improved in the last decades, life expectancy is still reduced in this MFS cohort compared to the Norwegian population.</description><subject>Adult</subject><subject>Adults</subject><subject>Aged</subject><subject>Aorta</subject><subject>Aorta - pathology</subject><subject>aortic surgery</subject><subject>Cancer</subject><subject>cardiovascular events</subject><subject>Cause of Death</subject><subject>causes of death</subject><subject>Confidence intervals</subject><subject>Connective tissues</subject><subject>Death</subject><subject>Female</subject><subject>Health risk assessment</subject><subject>Humans</subject><subject>Life expectancy</subject><subject>Life span</subject><subject>Male</subject><subject>Marfan syndrome</subject><subject>Marfan Syndrome - epidemiology</subject><subject>Marfan Syndrome - mortality</subject><subject>Marfan Syndrome - pathology</subject><subject>Mathematical analysis</subject><subject>Medical records</subject><subject>Men</subject><subject>Middle Aged</subject><subject>Mortality</subject><subject>Norway</subject><subject>Original</subject><subject>Pathology</subject><subject>Patients</subject><subject>Surgery</subject><subject>Survival</subject><subject>Women</subject><issn>2324-9269</issn><issn>2324-9269</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2018</creationdate><recordtype>article</recordtype><sourceid>24P</sourceid><sourceid>EIF</sourceid><sourceid>BENPR</sourceid><sourceid>3HK</sourceid><recordid>eNp1kUFvFCEUx4nR2KY28RMoiRcPnQo8hoGLiWnq1qRND9ozYRlml2YGVpiZZr99Wbet1aRceHn88uPBH6H3lJxSQtiXYbWCUy7VK3TIgPFKMaFeP6sP0HHOt6QsKTkVzVt0AAQUKEkO0c3PKc1-Nv0JtmbKLuPY4daZcX2CTWhLM7U-zibbqTcJu9mFMWMf8MaM_k9958c1vjKpMwHnbWhTHNw79KYzfXbHD_sRuvl-_uvsorq8Xvw4-3ZZWa6IqixQ5gBqxSTQTja0tCWXHDgXjjMDXPGlANHxBogyZfYWQC1bZTsjme3gCH3dezfTcnCtLQMl0-tN8oNJWx2N1_-eBL_WqzhrAaQWAorg415gk8-jDzrEZDQlsma6obWUhfj8cEWKvyeXRz34bF3fm-DilDWjQEgBqSrop__Q2zilUD6gUIIwVtes-Su0KeacXPc0LiV6F6jeBapLoAX98Px5T-BjfAWo9sCd7932RZG-WixgJ7wHV6enKg</recordid><startdate>201811</startdate><enddate>201811</enddate><creator>Vanem, Thy Thy</creator><creator>Geiran, Odd Ragnar</creator><creator>Krohg‐Sørensen, Kirsten</creator><creator>Røe, Cecilie</creator><creator>Paus, Benedicte</creator><creator>Rand‐Hendriksen, Svend</creator><general>John Wiley & Sons, Inc</general><general>Wiley</general><general>John Wiley and Sons Inc</general><scope>24P</scope><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7QO</scope><scope>8FD</scope><scope>8FE</scope><scope>8FH</scope><scope>ABUWG</scope><scope>AEUYN</scope><scope>AFKRA</scope><scope>AZQEC</scope><scope>BBNVY</scope><scope>BENPR</scope><scope>BHPHI</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FR3</scope><scope>GNUQQ</scope><scope>HCIFZ</scope><scope>LK8</scope><scope>M7P</scope><scope>P64</scope><scope>PIMPY</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>RC3</scope><scope>7X8</scope><scope>3HK</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0003-2792-8864</orcidid></search><sort><creationdate>201811</creationdate><title>Survival, causes of death, and cardiovascular events in patients with Marfan syndrome</title><author>Vanem, Thy Thy ; Geiran, Odd Ragnar ; Krohg‐Sørensen, Kirsten ; Røe, Cecilie ; Paus, Benedicte ; Rand‐Hendriksen, Svend</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c4909-c312e33592831f871c4984843446e42a3494b636f47309a167d339bd9cfa82cf3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2018</creationdate><topic>Adult</topic><topic>Adults</topic><topic>Aged</topic><topic>Aorta</topic><topic>Aorta - pathology</topic><topic>aortic surgery</topic><topic>Cancer</topic><topic>cardiovascular events</topic><topic>Cause of Death</topic><topic>causes of death</topic><topic>Confidence intervals</topic><topic>Connective tissues</topic><topic>Death</topic><topic>Female</topic><topic>Health risk assessment</topic><topic>Humans</topic><topic>Life expectancy</topic><topic>Life span</topic><topic>Male</topic><topic>Marfan syndrome</topic><topic>Marfan Syndrome - epidemiology</topic><topic>Marfan Syndrome - mortality</topic><topic>Marfan Syndrome - pathology</topic><topic>Mathematical analysis</topic><topic>Medical records</topic><topic>Men</topic><topic>Middle Aged</topic><topic>Mortality</topic><topic>Norway</topic><topic>Original</topic><topic>Pathology</topic><topic>Patients</topic><topic>Surgery</topic><topic>Survival</topic><topic>Women</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Vanem, Thy Thy</creatorcontrib><creatorcontrib>Geiran, Odd Ragnar</creatorcontrib><creatorcontrib>Krohg‐Sørensen, Kirsten</creatorcontrib><creatorcontrib>Røe, Cecilie</creatorcontrib><creatorcontrib>Paus, Benedicte</creatorcontrib><creatorcontrib>Rand‐Hendriksen, Svend</creatorcontrib><collection>Wiley-Blackwell Open Access Titles</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Biotechnology Research Abstracts</collection><collection>Technology Research Database</collection><collection>ProQuest SciTech Collection</collection><collection>ProQuest Natural Science Collection</collection><collection>ProQuest Central (Alumni Edition)</collection><collection>ProQuest One Sustainability</collection><collection>ProQuest Central UK/Ireland</collection><collection>ProQuest Central Essentials</collection><collection>Biological Science Collection</collection><collection>ProQuest Central</collection><collection>Natural Science Collection</collection><collection>ProQuest One Community College</collection><collection>ProQuest Central Korea</collection><collection>Engineering Research Database</collection><collection>ProQuest Central Student</collection><collection>SciTech Premium Collection</collection><collection>ProQuest Biological Science Collection</collection><collection>Biological Science Database</collection><collection>Biotechnology and BioEngineering Abstracts</collection><collection>Publicly Available Content Database</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest Central China</collection><collection>Genetics Abstracts</collection><collection>MEDLINE - Academic</collection><collection>NORA - Norwegian Open Research Archives</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Molecular genetics & genomic medicine</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Vanem, Thy Thy</au><au>Geiran, Odd Ragnar</au><au>Krohg‐Sørensen, Kirsten</au><au>Røe, Cecilie</au><au>Paus, Benedicte</au><au>Rand‐Hendriksen, Svend</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Survival, causes of death, and cardiovascular events in patients with Marfan syndrome</atitle><jtitle>Molecular genetics & genomic medicine</jtitle><addtitle>Mol Genet Genomic Med</addtitle><date>2018-11</date><risdate>2018</risdate><volume>6</volume><issue>6</issue><spage>1114</spage><epage>1123</epage><pages>1114-1123</pages><issn>2324-9269</issn><eissn>2324-9269</eissn><abstract>Background
To explore survival, causes of death, and the prevalence of cardiovascular events in a Norwegian Marfan syndrome (MFS) cohort. MFS is a heritable connective tissue disorder associated with reduced life expectancy–primarily due to aortic pathology.
Methods
A follow‐up study of 84 MFS adults, initially investigated in 2003–2004. In 2014–2015, 16 were deceased, 47 of 68 survivors consented to new clinical investigations. Analyses of events were performed for 47 survivors and 16 deceased at follow‐up. Standardized mortality ratios (SMR), using the mortality rate of the Norwegian population as reference, were calculated for all 84 and calculated for men and women separately. Causes of death and information on cardiovascular events were retrieved from death certificates and medical records.
Results
Standardized mortality ratios (95% confidence interval): for the whole cohort: 5.24 (3.00–8.51); for men: 8.20 (3.54–16.16); for women: 3.85 (1.66–7.58). Cardiovascular causes were found in 11 of 16 deceased, eight of these related to aortic pathology. Cancer was the cause of death in three patients. At follow‐up, 51% had new cardiovascular events; 59% had undergone aortic surgery. Men experienced aortic events at younger age than women. 32% of the survivors were not followed‐up as recommended.
Conclusion
Life expectancy is reduced in this MFS cohort compared to the Norwegian population. Cardiovascular complications develop throughout life, particularly aortic pathology, the major cause of death in MFS. Death and aortic pathology seem to occur earlier in men. There is a need to improve follow‐up according to guidelines.
Marfan syndrome (MFS) is a heritable connective tissue disorder associated with reduced life expectancy. We wanted to explore survival, causes of death, and the prevalence of cardiovascular events in a Norwegian MFS cohort of 84 adults. Although medical and surgical treatments have improved in the last decades, life expectancy is still reduced in this MFS cohort compared to the Norwegian population.</abstract><cop>United States</cop><pub>John Wiley & Sons, Inc</pub><pmid>30393980</pmid><doi>10.1002/mgg3.489</doi><tpages>10</tpages><orcidid>https://orcid.org/0000-0003-2792-8864</orcidid><oa>free_for_read</oa></addata></record> |
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| source | MEDLINE; NORA - Norwegian Open Research Archives; Wiley-Blackwell Open Access Titles; DOAJ Directory of Open Access Journals; Wiley Online Library Journals Frontfile Complete; Elektronische Zeitschriftenbibliothek - Frei zugängliche E-Journals; PubMed Central |
| subjects | Adult Adults Aged Aorta Aorta - pathology aortic surgery Cancer cardiovascular events Cause of Death causes of death Confidence intervals Connective tissues Death Female Health risk assessment Humans Life expectancy Life span Male Marfan syndrome Marfan Syndrome - epidemiology Marfan Syndrome - mortality Marfan Syndrome - pathology Mathematical analysis Medical records Men Middle Aged Mortality Norway Original Pathology Patients Surgery Survival Women |
| title | Survival, causes of death, and cardiovascular events in patients with Marfan syndrome |
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