Challenges and opportunities for HSCT outcome registries: perspective from international HSCT registries experts.
Identifieur interne : 003B52 ( Main/Exploration ); précédent : 003B51; suivant : 003B53Challenges and opportunities for HSCT outcome registries: perspective from international HSCT registries experts.
Auteurs : M. Aljurf ; J D Rizzo [États-Unis] ; M. Mohty [France] ; F. Hussain ; A. Madrigal [Royaume-Uni] ; M C Pasquini [États-Unis] ; J. Passweg [Allemagne] ; N. Chaudhri ; A. Ghavamzadeh [Iran] ; H E Solh ; Y. Atsuta [Japon] ; J. Szer [Australie] ; Y. Kodera [Japon] ; D. Niederweiser [Allemagne] ; A. Gratwohl [Suisse] ; M M Horowitz [États-Unis]Source :
- Bone marrow transplantation [ 1476-5365 ] ; 2014.
Descripteurs français
- KwdFr :
- MESH :
English descriptors
- KwdEn :
- MESH :
Abstract
Patient registries, frequently referred to as outcome registries, are 'organized systems' that use observational study methods to collect uniform data. Registries are used to evaluate specified outcomes for a population defined by a particular disease, condition or exposure that serves one or more predetermined scientific, clinical or policy purposes. Outcome registries were established very early in the development of hematopoietic SCT (HSCT). Currently, myriads of national and international HSCT registries collect information about HSCT activities and outcomes. These registries have contributed significantly to determining trends, patterns, treatment practices and outcomes. There are many different HSCT registries, each with different aims and goals; some are led by professional organizations, others by government authorities, health care providers or third parties. Some registries simply assess activity and others study outcomes. These registries are complementary and are gradually developing interoperability with each other to expand future collaborative research activities. A key development in the last few years was the incorporation of recommendations into the World Health Organization guiding principles on cell, tissue and organ transplantation. The data collection and analysis should be an integral part of therapy and an obligation rather than a choice for transplant programs. This article examines challenges in ensuring data quality and functions of outcome registries, using HSCT registries as an example. It applies to all HSCT-related data, but is predominantly focused on HSCT registries of professional organizations.
DOI: 10.1038/bmt.2014.78
PubMed: 24777183
Affiliations:
- Allemagne, Australie, France, Iran, Japon, Royaume-Uni, Suisse, États-Unis
- Angleterre, District de Leipzig, Grand Londres, Saxe (Land), Wisconsin, Île-de-France
- Leipzig, Londres, Paris
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Le document en format XML
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Aljurf</name><affiliation><nlm:affiliation>Oncology Center, King Faisal Specialist Hospital and Research Centre, Riyadh, Kingdom of Saudi Arabia.</nlm:affiliation><wicri:noCountry code="subField">Kingdom of Saudi Arabia</wicri:noCountry></affiliation></author><author><name sortKey="Rizzo, J D" sort="Rizzo, J D" uniqKey="Rizzo J" first="J D" last="Rizzo">J D Rizzo</name><affiliation wicri:level="2"><nlm:affiliation>Center for International Blood and Marrow Transplant Research, Milwaukee, WI, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Center for International Blood and Marrow Transplant Research, Milwaukee, WI</wicri:regionArea><placeName><region type="state">Wisconsin</region></placeName></affiliation></author><author><name sortKey="Mohty, M" sort="Mohty, M" uniqKey="Mohty M" first="M" last="Mohty">M. Mohty</name><affiliation wicri:level="3"><nlm:affiliation>Hematology Department, Saint-Antoine Hospital, Paris, France.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Hematology Department, Saint-Antoine Hospital, Paris</wicri:regionArea><placeName><region type="region">Île-de-France</region><region type="old region">Île-de-France</region><settlement type="city">Paris</settlement></placeName></affiliation></author><author><name sortKey="Hussain, F" sort="Hussain, F" uniqKey="Hussain F" first="F" last="Hussain">F. Hussain</name><affiliation><nlm:affiliation>Oncology Center, King Faisal Specialist Hospital and Research Centre, Riyadh, Kingdom of Saudi Arabia.</nlm:affiliation><wicri:noCountry code="subField">Kingdom of Saudi Arabia</wicri:noCountry></affiliation></author><author><name sortKey="Madrigal, A" sort="Madrigal, A" uniqKey="Madrigal A" first="A" last="Madrigal">A. Madrigal</name><affiliation wicri:level="3"><nlm:affiliation>The Royal Free and University College Medical School, London, UK.</nlm:affiliation><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>The Royal Free and University College Medical School, London</wicri:regionArea><placeName><settlement type="city">Londres</settlement><region type="country">Angleterre</region><region type="région" nuts="1">Grand Londres</region></placeName></affiliation></author><author><name sortKey="Pasquini, M C" sort="Pasquini, M C" uniqKey="Pasquini M" first="M C" last="Pasquini">M C Pasquini</name><affiliation wicri:level="2"><nlm:affiliation>Center for International Blood and Marrow Transplant Research, Milwaukee, WI, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Center for International Blood and Marrow Transplant Research, Milwaukee, WI</wicri:regionArea><placeName><region type="state">Wisconsin</region></placeName></affiliation></author><author><name sortKey="Passweg, J" sort="Passweg, J" uniqKey="Passweg J" first="J" last="Passweg">J. Passweg</name><affiliation wicri:level="3"><nlm:affiliation>University of Leipzig, Leipzig, Germany.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>University of Leipzig, Leipzig</wicri:regionArea><placeName><region type="land" nuts="1">Saxe (Land)</region><region type="district" nuts="2">District de Leipzig</region><settlement type="city">Leipzig</settlement></placeName></affiliation></author><author><name sortKey="Chaudhri, N" sort="Chaudhri, N" uniqKey="Chaudhri N" first="N" last="Chaudhri">N. Chaudhri</name><affiliation><nlm:affiliation>Oncology Center, King Faisal Specialist Hospital and Research Centre, Riyadh, Kingdom of Saudi Arabia.</nlm:affiliation><wicri:noCountry code="subField">Kingdom of Saudi Arabia</wicri:noCountry></affiliation></author><author><name sortKey="Ghavamzadeh, A" sort="Ghavamzadeh, A" uniqKey="Ghavamzadeh A" first="A" last="Ghavamzadeh">A. Ghavamzadeh</name><affiliation wicri:level="1"><nlm:affiliation>Tehran University of Medical Sciences, Hematology, Oncology and SCT Research Center, Tehran, Iran.</nlm:affiliation><country xml:lang="fr">Iran</country><wicri:regionArea>Tehran University of Medical Sciences, Hematology, Oncology and SCT Research Center, Tehran</wicri:regionArea><wicri:noRegion>Tehran</wicri:noRegion></affiliation></author><author><name sortKey="Solh, H E" sort="Solh, H E" uniqKey="Solh H" first="H E" last="Solh">H E Solh</name><affiliation><nlm:affiliation>Oncology Center, King Faisal Specialist Hospital and Research Centre, Riyadh, Kingdom of Saudi Arabia.</nlm:affiliation><wicri:noCountry code="subField">Kingdom of Saudi Arabia</wicri:noCountry></affiliation></author><author><name sortKey="Atsuta, Y" sort="Atsuta, Y" uniqKey="Atsuta Y" first="Y" last="Atsuta">Y. Atsuta</name><affiliation wicri:level="1"><nlm:affiliation>Nagoya University Graduate School of Medicine, Nagoya, Japan.</nlm:affiliation><country xml:lang="fr">Japon</country><wicri:regionArea>Nagoya University Graduate School of Medicine, Nagoya</wicri:regionArea><wicri:noRegion>Nagoya</wicri:noRegion></affiliation></author><author><name sortKey="Szer, J" sort="Szer, J" uniqKey="Szer J" first="J" last="Szer">J. Szer</name><affiliation wicri:level="1"><nlm:affiliation>The Royal Melbourne Hospital, Parkville, Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>The Royal Melbourne Hospital, Parkville</wicri:regionArea><wicri:noRegion>Parkville</wicri:noRegion></affiliation></author><author><name sortKey="Kodera, Y" sort="Kodera, Y" uniqKey="Kodera Y" first="Y" last="Kodera">Y. Kodera</name><affiliation wicri:level="1"><nlm:affiliation>Aichi Medical University School of Medicine, Aichi, Japan.</nlm:affiliation><country xml:lang="fr">Japon</country><wicri:regionArea>Aichi Medical University School of Medicine, Aichi</wicri:regionArea><wicri:noRegion>Aichi</wicri:noRegion></affiliation></author><author><name sortKey="Niederweiser, D" sort="Niederweiser, D" uniqKey="Niederweiser D" first="D" last="Niederweiser">D. Niederweiser</name><affiliation wicri:level="3"><nlm:affiliation>University of Leipzig, Leipzig, Germany.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>University of Leipzig, Leipzig</wicri:regionArea><placeName><region type="land" nuts="1">Saxe (Land)</region><region type="district" nuts="2">District de Leipzig</region><settlement type="city">Leipzig</settlement></placeName></affiliation></author><author><name sortKey="Gratwohl, A" sort="Gratwohl, A" uniqKey="Gratwohl A" first="A" last="Gratwohl">A. Gratwohl</name><affiliation wicri:level="1"><nlm:affiliation>University Hospital of Basel, Basel, Switzerland.</nlm:affiliation><country xml:lang="fr">Suisse</country><wicri:regionArea>University Hospital of Basel, Basel</wicri:regionArea><wicri:noRegion>Basel</wicri:noRegion></affiliation></author><author><name sortKey="Horowitz, M M" sort="Horowitz, M M" uniqKey="Horowitz M" first="M M" last="Horowitz">M M Horowitz</name><affiliation wicri:level="2"><nlm:affiliation>Center for International Blood and Marrow Transplant Research, Milwaukee, WI, USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Center for International Blood and Marrow Transplant Research, Milwaukee, WI</wicri:regionArea><placeName><region type="state">Wisconsin</region></placeName></affiliation></author></analytic><series><title level="j">Bone marrow transplantation</title><idno type="eISSN">1476-5365</idno><imprint><date when="2014" type="published">2014</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Hematopoietic Stem Cell Transplantation</term><term>Humans</term><term>Multicenter Studies as Topic</term><term>Registries</term></keywords><keywords scheme="KwdFr" xml:lang="fr"><term>Enregistrements</term><term>Humains</term><term>Transplantation de cellules souches hématopoïétiques</term><term>Études multicentriques comme sujet</term></keywords><keywords scheme="MESH" xml:lang="en"><term>Hematopoietic Stem Cell Transplantation</term><term>Humans</term><term>Multicenter Studies as Topic</term><term>Registries</term></keywords><keywords scheme="MESH" xml:lang="fr"><term>Enregistrements</term><term>Humains</term><term>Transplantation de cellules souches hématopoïétiques</term><term>Études multicentriques comme sujet</term></keywords></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">Patient registries, frequently referred to as outcome registries, are 'organized systems' that use observational study methods to collect uniform data. Registries are used to evaluate specified outcomes for a population defined by a particular disease, condition or exposure that serves one or more predetermined scientific, clinical or policy purposes. Outcome registries were established very early in the development of hematopoietic SCT (HSCT). Currently, myriads of national and international HSCT registries collect information about HSCT activities and outcomes. These registries have contributed significantly to determining trends, patterns, treatment practices and outcomes. There are many different HSCT registries, each with different aims and goals; some are led by professional organizations, others by government authorities, health care providers or third parties. Some registries simply assess activity and others study outcomes. These registries are complementary and are gradually developing interoperability with each other to expand future collaborative research activities. A key development in the last few years was the incorporation of recommendations into the World Health Organization guiding principles on cell, tissue and organ transplantation. The data collection and analysis should be an integral part of therapy and an obligation rather than a choice for transplant programs. This article examines challenges in ensuring data quality and functions of outcome registries, using HSCT registries as an example. It applies to all HSCT-related data, but is predominantly focused on HSCT registries of professional organizations.</div></front></TEI><affiliations><list><country><li>Allemagne</li><li>Australie</li><li>France</li><li>Iran</li><li>Japon</li><li>Royaume-Uni</li><li>Suisse</li><li>États-Unis</li></country><region><li>Angleterre</li><li>District de Leipzig</li><li>Grand Londres</li><li>Saxe (Land)</li><li>Wisconsin</li><li>Île-de-France</li></region><settlement><li>Leipzig</li><li>Londres</li><li>Paris</li></settlement></list><tree><noCountry><name sortKey="Aljurf, M" sort="Aljurf, M" uniqKey="Aljurf M" first="M" last="Aljurf">M. Aljurf</name><name sortKey="Chaudhri, N" sort="Chaudhri, N" uniqKey="Chaudhri N" first="N" last="Chaudhri">N. Chaudhri</name><name sortKey="Hussain, F" sort="Hussain, F" uniqKey="Hussain F" first="F" last="Hussain">F. Hussain</name><name sortKey="Solh, H E" sort="Solh, H E" uniqKey="Solh H" first="H E" last="Solh">H E Solh</name></noCountry><country name="États-Unis"><region name="Wisconsin"><name sortKey="Rizzo, J D" sort="Rizzo, J D" uniqKey="Rizzo J" first="J D" last="Rizzo">J D Rizzo</name></region><name sortKey="Horowitz, M M" sort="Horowitz, M M" uniqKey="Horowitz M" first="M M" last="Horowitz">M M Horowitz</name><name sortKey="Pasquini, M C" sort="Pasquini, M C" uniqKey="Pasquini M" first="M C" last="Pasquini">M C Pasquini</name></country><country name="France"><region name="Île-de-France"><name sortKey="Mohty, M" sort="Mohty, M" uniqKey="Mohty M" first="M" last="Mohty">M. Mohty</name></region></country><country name="Royaume-Uni"><region name="Angleterre"><name sortKey="Madrigal, A" sort="Madrigal, A" uniqKey="Madrigal A" first="A" last="Madrigal">A. Madrigal</name></region></country><country name="Allemagne"><region name="Saxe (Land)"><name sortKey="Passweg, J" sort="Passweg, J" uniqKey="Passweg J" first="J" last="Passweg">J. Passweg</name></region><name sortKey="Niederweiser, D" sort="Niederweiser, D" uniqKey="Niederweiser D" first="D" last="Niederweiser">D. Niederweiser</name></country><country name="Iran"><noRegion><name sortKey="Ghavamzadeh, A" sort="Ghavamzadeh, A" uniqKey="Ghavamzadeh A" first="A" last="Ghavamzadeh">A. Ghavamzadeh</name></noRegion></country><country name="Japon"><noRegion><name sortKey="Atsuta, Y" sort="Atsuta, Y" uniqKey="Atsuta Y" first="Y" last="Atsuta">Y. Atsuta</name></noRegion><name sortKey="Kodera, Y" sort="Kodera, Y" uniqKey="Kodera Y" first="Y" last="Kodera">Y. Kodera</name></country><country name="Australie"><noRegion><name sortKey="Szer, J" sort="Szer, J" uniqKey="Szer J" first="J" last="Szer">J. Szer</name></noRegion></country><country name="Suisse"><noRegion><name sortKey="Gratwohl, A" sort="Gratwohl, A" uniqKey="Gratwohl A" first="A" last="Gratwohl">A. Gratwohl</name></noRegion></country></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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