Loading…
An overview of international literature from cystic fibrosis registries. Part 4: Update 2011
Abstract A total of 53 national cystic fibrosis (CF) patient registry studies published between July 2008 and November 2011 have been reviewed, focusing on the following topics: CF epidemiology, nutrition, microbiology, clinical complications, factors influencing diagnosis and lung disease, effects...
Saved in:
Published in: | Journal of cystic fibrosis 2012-12, Vol.11 (6), p.480-493 |
---|---|
Main Authors: | , , , , , , , , , , |
Format: | Article |
Language: | English |
Subjects: | |
Citations: | Items that this one cites Items that cite this one |
Online Access: | Get full text |
Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
cited_by | cdi_FETCH-LOGICAL-c484t-4bfa75b5baf5fc5e7a3d07f64e7c3a55db5d6d41bb7cc63b4dbd4308638039573 |
---|---|
cites | cdi_FETCH-LOGICAL-c484t-4bfa75b5baf5fc5e7a3d07f64e7c3a55db5d6d41bb7cc63b4dbd4308638039573 |
container_end_page | 493 |
container_issue | 6 |
container_start_page | 480 |
container_title | Journal of cystic fibrosis |
container_volume | 11 |
creator | Salvatore, Donatello Buzzetti, Roberto Baldo, Ermanno Furnari, Maria Lucia Lucidi, Vincenzina Manunza, Daniela Marinelli, Italo Messore, Barbara Neri, Anna Silvia Raia, Valeria Mastella, Gianni |
description | Abstract A total of 53 national cystic fibrosis (CF) patient registry studies published between July 2008 and November 2011 have been reviewed, focusing on the following topics: CF epidemiology, nutrition, microbiology, clinical complications, factors influencing diagnosis and lung disease, effects of socioeconomic status, therapeutic strategy evaluation, clinical trial methodology. The studies describe the clinical characteristics of CF patients, the incidence and prevalence of disease and role of gender gap, as well as the influence of socioeconomic status and environmental factors on clinical outcomes, covering a variety of countries and ethnic groups. Original observations describe patients as they get older, with special reference to the adult presentation of CF and long-term survival. Methodological aspects are discussed, covering the design of clinical trials, survival analysis, auxometry, measures of quality of life, follow up of lung disease, predictability of disease progression and life expectancy. Microbiology studies have investigated the role of selected pathogens, such as Burkholderia species and MRSA. Pulmonary exacerbations are discussed both as a factor influencing morbidity and an endpoint in clinical trials. Finally, some studies give insights on complications, such as CF-related diabetes and hemoptysis, and emerging problems, such as chronic nephropathy. |
doi_str_mv | 10.1016/j.jcf.2012.07.005 |
format | article |
fullrecord | <record><control><sourceid>proquest_cross</sourceid><recordid>TN_cdi_proquest_miscellaneous_1151701468</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><els_id>S156919931200135X</els_id><sourcerecordid>1151701468</sourcerecordid><originalsourceid>FETCH-LOGICAL-c484t-4bfa75b5baf5fc5e7a3d07f64e7c3a55db5d6d41bb7cc63b4dbd4308638039573</originalsourceid><addsrcrecordid>eNp9kU1rFTEYhUNR-qU_oBvJ0s2MySSZzK0glGJVKFhoCy6EkI83JePcyTXJtNx_by63deHCVRI455DzHITOKGkpof2HsR2tbztCu5bIlhBxgI7pIFkjCCWv6l30q4auVuwIneQ8EkIlkcMhOuq6YeBMimP082LG8RHSY4AnHD0Oc4E06xLirCc8hfrSZUmAfYprbLe5BIt9MCnmkHGCh5BLCpBbfKNTwfwc32-cLoDrr-gb9NrrKcPb5_MU3V99vrv82lx___Lt8uK6sXzgpeHGaymMMNoLbwVIzRyRvucgLdNCOCNc7zg1RlrbM8OdcZyRoWcDYSsh2Sl6v8_dpPh7gVzUOmQL06RniEtWlIranPJ-qFK6l9raICfwapPCWqetokTtoKpRVahqB1URqSrU6nn3HL-YNbi_jheKVfBxL4BaspJMKtsAswUXEtiiXAz_jf_0j9tOYQ5WT79gC3mMSx1kqi1Urh51u1t1Nyrt6qBM_GB_AAconGQ</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>1151701468</pqid></control><display><type>article</type><title>An overview of international literature from cystic fibrosis registries. Part 4: Update 2011</title><source>ScienceDirect Journals</source><creator>Salvatore, Donatello ; Buzzetti, Roberto ; Baldo, Ermanno ; Furnari, Maria Lucia ; Lucidi, Vincenzina ; Manunza, Daniela ; Marinelli, Italo ; Messore, Barbara ; Neri, Anna Silvia ; Raia, Valeria ; Mastella, Gianni</creator><creatorcontrib>Salvatore, Donatello ; Buzzetti, Roberto ; Baldo, Ermanno ; Furnari, Maria Lucia ; Lucidi, Vincenzina ; Manunza, Daniela ; Marinelli, Italo ; Messore, Barbara ; Neri, Anna Silvia ; Raia, Valeria ; Mastella, Gianni</creatorcontrib><description>Abstract A total of 53 national cystic fibrosis (CF) patient registry studies published between July 2008 and November 2011 have been reviewed, focusing on the following topics: CF epidemiology, nutrition, microbiology, clinical complications, factors influencing diagnosis and lung disease, effects of socioeconomic status, therapeutic strategy evaluation, clinical trial methodology. The studies describe the clinical characteristics of CF patients, the incidence and prevalence of disease and role of gender gap, as well as the influence of socioeconomic status and environmental factors on clinical outcomes, covering a variety of countries and ethnic groups. Original observations describe patients as they get older, with special reference to the adult presentation of CF and long-term survival. Methodological aspects are discussed, covering the design of clinical trials, survival analysis, auxometry, measures of quality of life, follow up of lung disease, predictability of disease progression and life expectancy. Microbiology studies have investigated the role of selected pathogens, such as Burkholderia species and MRSA. Pulmonary exacerbations are discussed both as a factor influencing morbidity and an endpoint in clinical trials. Finally, some studies give insights on complications, such as CF-related diabetes and hemoptysis, and emerging problems, such as chronic nephropathy.</description><identifier>ISSN: 1569-1993</identifier><identifier>EISSN: 1873-5010</identifier><identifier>DOI: 10.1016/j.jcf.2012.07.005</identifier><identifier>PMID: 22884375</identifier><language>eng</language><publisher>Netherlands: Elsevier B.V</publisher><subject>CF related diabetes ; Cystic fibrosis ; Cystic Fibrosis - epidemiology ; Cystic Fibrosis - therapy ; Demographics ; Diagnosis factors ; Epidemiology ; Gender gap ; Humans ; Incidence ; Internationality ; Lung disease factors ; Microbiology ; Nutrition ; Patient registry ; Prevalence ; Pulmonary/Respiratory ; Registries - statistics & numerical data ; Socioeconomic status ; Therapy evaluation</subject><ispartof>Journal of cystic fibrosis, 2012-12, Vol.11 (6), p.480-493</ispartof><rights>European Cystic Fibrosis Society.</rights><rights>2012 European Cystic Fibrosis Society.</rights><rights>Copyright © 2012 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c484t-4bfa75b5baf5fc5e7a3d07f64e7c3a55db5d6d41bb7cc63b4dbd4308638039573</citedby><cites>FETCH-LOGICAL-c484t-4bfa75b5baf5fc5e7a3d07f64e7c3a55db5d6d41bb7cc63b4dbd4308638039573</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>314,780,784,27924,27925</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/22884375$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Salvatore, Donatello</creatorcontrib><creatorcontrib>Buzzetti, Roberto</creatorcontrib><creatorcontrib>Baldo, Ermanno</creatorcontrib><creatorcontrib>Furnari, Maria Lucia</creatorcontrib><creatorcontrib>Lucidi, Vincenzina</creatorcontrib><creatorcontrib>Manunza, Daniela</creatorcontrib><creatorcontrib>Marinelli, Italo</creatorcontrib><creatorcontrib>Messore, Barbara</creatorcontrib><creatorcontrib>Neri, Anna Silvia</creatorcontrib><creatorcontrib>Raia, Valeria</creatorcontrib><creatorcontrib>Mastella, Gianni</creatorcontrib><title>An overview of international literature from cystic fibrosis registries. Part 4: Update 2011</title><title>Journal of cystic fibrosis</title><addtitle>J Cyst Fibros</addtitle><description>Abstract A total of 53 national cystic fibrosis (CF) patient registry studies published between July 2008 and November 2011 have been reviewed, focusing on the following topics: CF epidemiology, nutrition, microbiology, clinical complications, factors influencing diagnosis and lung disease, effects of socioeconomic status, therapeutic strategy evaluation, clinical trial methodology. The studies describe the clinical characteristics of CF patients, the incidence and prevalence of disease and role of gender gap, as well as the influence of socioeconomic status and environmental factors on clinical outcomes, covering a variety of countries and ethnic groups. Original observations describe patients as they get older, with special reference to the adult presentation of CF and long-term survival. Methodological aspects are discussed, covering the design of clinical trials, survival analysis, auxometry, measures of quality of life, follow up of lung disease, predictability of disease progression and life expectancy. Microbiology studies have investigated the role of selected pathogens, such as Burkholderia species and MRSA. Pulmonary exacerbations are discussed both as a factor influencing morbidity and an endpoint in clinical trials. Finally, some studies give insights on complications, such as CF-related diabetes and hemoptysis, and emerging problems, such as chronic nephropathy.</description><subject>CF related diabetes</subject><subject>Cystic fibrosis</subject><subject>Cystic Fibrosis - epidemiology</subject><subject>Cystic Fibrosis - therapy</subject><subject>Demographics</subject><subject>Diagnosis factors</subject><subject>Epidemiology</subject><subject>Gender gap</subject><subject>Humans</subject><subject>Incidence</subject><subject>Internationality</subject><subject>Lung disease factors</subject><subject>Microbiology</subject><subject>Nutrition</subject><subject>Patient registry</subject><subject>Prevalence</subject><subject>Pulmonary/Respiratory</subject><subject>Registries - statistics & numerical data</subject><subject>Socioeconomic status</subject><subject>Therapy evaluation</subject><issn>1569-1993</issn><issn>1873-5010</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2012</creationdate><recordtype>article</recordtype><recordid>eNp9kU1rFTEYhUNR-qU_oBvJ0s2MySSZzK0glGJVKFhoCy6EkI83JePcyTXJtNx_by63deHCVRI455DzHITOKGkpof2HsR2tbztCu5bIlhBxgI7pIFkjCCWv6l30q4auVuwIneQ8EkIlkcMhOuq6YeBMimP082LG8RHSY4AnHD0Oc4E06xLirCc8hfrSZUmAfYprbLe5BIt9MCnmkHGCh5BLCpBbfKNTwfwc32-cLoDrr-gb9NrrKcPb5_MU3V99vrv82lx___Lt8uK6sXzgpeHGaymMMNoLbwVIzRyRvucgLdNCOCNc7zg1RlrbM8OdcZyRoWcDYSsh2Sl6v8_dpPh7gVzUOmQL06RniEtWlIranPJ-qFK6l9raICfwapPCWqetokTtoKpRVahqB1URqSrU6nn3HL-YNbi_jheKVfBxL4BaspJMKtsAswUXEtiiXAz_jf_0j9tOYQ5WT79gC3mMSx1kqi1Urh51u1t1Nyrt6qBM_GB_AAconGQ</recordid><startdate>20121201</startdate><enddate>20121201</enddate><creator>Salvatore, Donatello</creator><creator>Buzzetti, Roberto</creator><creator>Baldo, Ermanno</creator><creator>Furnari, Maria Lucia</creator><creator>Lucidi, Vincenzina</creator><creator>Manunza, Daniela</creator><creator>Marinelli, Italo</creator><creator>Messore, Barbara</creator><creator>Neri, Anna Silvia</creator><creator>Raia, Valeria</creator><creator>Mastella, Gianni</creator><general>Elsevier B.V</general><scope>6I.</scope><scope>AAFTH</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>7X8</scope></search><sort><creationdate>20121201</creationdate><title>An overview of international literature from cystic fibrosis registries. Part 4: Update 2011</title><author>Salvatore, Donatello ; Buzzetti, Roberto ; Baldo, Ermanno ; Furnari, Maria Lucia ; Lucidi, Vincenzina ; Manunza, Daniela ; Marinelli, Italo ; Messore, Barbara ; Neri, Anna Silvia ; Raia, Valeria ; Mastella, Gianni</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c484t-4bfa75b5baf5fc5e7a3d07f64e7c3a55db5d6d41bb7cc63b4dbd4308638039573</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2012</creationdate><topic>CF related diabetes</topic><topic>Cystic fibrosis</topic><topic>Cystic Fibrosis - epidemiology</topic><topic>Cystic Fibrosis - therapy</topic><topic>Demographics</topic><topic>Diagnosis factors</topic><topic>Epidemiology</topic><topic>Gender gap</topic><topic>Humans</topic><topic>Incidence</topic><topic>Internationality</topic><topic>Lung disease factors</topic><topic>Microbiology</topic><topic>Nutrition</topic><topic>Patient registry</topic><topic>Prevalence</topic><topic>Pulmonary/Respiratory</topic><topic>Registries - statistics & numerical data</topic><topic>Socioeconomic status</topic><topic>Therapy evaluation</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Salvatore, Donatello</creatorcontrib><creatorcontrib>Buzzetti, Roberto</creatorcontrib><creatorcontrib>Baldo, Ermanno</creatorcontrib><creatorcontrib>Furnari, Maria Lucia</creatorcontrib><creatorcontrib>Lucidi, Vincenzina</creatorcontrib><creatorcontrib>Manunza, Daniela</creatorcontrib><creatorcontrib>Marinelli, Italo</creatorcontrib><creatorcontrib>Messore, Barbara</creatorcontrib><creatorcontrib>Neri, Anna Silvia</creatorcontrib><creatorcontrib>Raia, Valeria</creatorcontrib><creatorcontrib>Mastella, Gianni</creatorcontrib><collection>ScienceDirect Open Access Titles</collection><collection>Elsevier:ScienceDirect:Open Access</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><jtitle>Journal of cystic fibrosis</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Salvatore, Donatello</au><au>Buzzetti, Roberto</au><au>Baldo, Ermanno</au><au>Furnari, Maria Lucia</au><au>Lucidi, Vincenzina</au><au>Manunza, Daniela</au><au>Marinelli, Italo</au><au>Messore, Barbara</au><au>Neri, Anna Silvia</au><au>Raia, Valeria</au><au>Mastella, Gianni</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>An overview of international literature from cystic fibrosis registries. Part 4: Update 2011</atitle><jtitle>Journal of cystic fibrosis</jtitle><addtitle>J Cyst Fibros</addtitle><date>2012-12-01</date><risdate>2012</risdate><volume>11</volume><issue>6</issue><spage>480</spage><epage>493</epage><pages>480-493</pages><issn>1569-1993</issn><eissn>1873-5010</eissn><abstract>Abstract A total of 53 national cystic fibrosis (CF) patient registry studies published between July 2008 and November 2011 have been reviewed, focusing on the following topics: CF epidemiology, nutrition, microbiology, clinical complications, factors influencing diagnosis and lung disease, effects of socioeconomic status, therapeutic strategy evaluation, clinical trial methodology. The studies describe the clinical characteristics of CF patients, the incidence and prevalence of disease and role of gender gap, as well as the influence of socioeconomic status and environmental factors on clinical outcomes, covering a variety of countries and ethnic groups. Original observations describe patients as they get older, with special reference to the adult presentation of CF and long-term survival. Methodological aspects are discussed, covering the design of clinical trials, survival analysis, auxometry, measures of quality of life, follow up of lung disease, predictability of disease progression and life expectancy. Microbiology studies have investigated the role of selected pathogens, such as Burkholderia species and MRSA. Pulmonary exacerbations are discussed both as a factor influencing morbidity and an endpoint in clinical trials. Finally, some studies give insights on complications, such as CF-related diabetes and hemoptysis, and emerging problems, such as chronic nephropathy.</abstract><cop>Netherlands</cop><pub>Elsevier B.V</pub><pmid>22884375</pmid><doi>10.1016/j.jcf.2012.07.005</doi><tpages>14</tpages><oa>free_for_read</oa></addata></record> |
fulltext | fulltext |
identifier | ISSN: 1569-1993 |
ispartof | Journal of cystic fibrosis, 2012-12, Vol.11 (6), p.480-493 |
issn | 1569-1993 1873-5010 |
language | eng |
recordid | cdi_proquest_miscellaneous_1151701468 |
source | ScienceDirect Journals |
subjects | CF related diabetes Cystic fibrosis Cystic Fibrosis - epidemiology Cystic Fibrosis - therapy Demographics Diagnosis factors Epidemiology Gender gap Humans Incidence Internationality Lung disease factors Microbiology Nutrition Patient registry Prevalence Pulmonary/Respiratory Registries - statistics & numerical data Socioeconomic status Therapy evaluation |
title | An overview of international literature from cystic fibrosis registries. Part 4: Update 2011 |
url | http://sfxeu10.hosted.exlibrisgroup.com/loughborough?ctx_ver=Z39.88-2004&ctx_enc=info:ofi/enc:UTF-8&ctx_tim=2024-12-23T03%3A29%3A31IST&url_ver=Z39.88-2004&url_ctx_fmt=infofi/fmt:kev:mtx:ctx&rfr_id=info:sid/primo.exlibrisgroup.com:primo3-Article-proquest_cross&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&rft.genre=article&rft.atitle=An%20overview%20of%20international%20literature%20from%20cystic%20fibrosis%20registries.%20Part%204:%20Update%202011&rft.jtitle=Journal%20of%20cystic%20fibrosis&rft.au=Salvatore,%20Donatello&rft.date=2012-12-01&rft.volume=11&rft.issue=6&rft.spage=480&rft.epage=493&rft.pages=480-493&rft.issn=1569-1993&rft.eissn=1873-5010&rft_id=info:doi/10.1016/j.jcf.2012.07.005&rft_dat=%3Cproquest_cross%3E1151701468%3C/proquest_cross%3E%3Cgrp_id%3Ecdi_FETCH-LOGICAL-c484t-4bfa75b5baf5fc5e7a3d07f64e7c3a55db5d6d41bb7cc63b4dbd4308638039573%3C/grp_id%3E%3Coa%3E%3C/oa%3E%3Curl%3E%3C/url%3E&rft_id=info:oai/&rft_pqid=1151701468&rft_id=info:pmid/22884375&rfr_iscdi=true |