<?xml version="1.0" encoding="ISO-8859-1"?><article xmlns:mml="http://www.w3.org/1998/Math/MathML" xmlns:xlink="http://www.w3.org/1999/xlink" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance">
<front>
<journal-meta>
<journal-id>2504-3145</journal-id>
<journal-title><![CDATA[Portuguese Journal of Public Health]]></journal-title>
<abbrev-journal-title><![CDATA[Port J Public Health]]></abbrev-journal-title>
<issn>2504-3145</issn>
<publisher>
<publisher-name><![CDATA[Escola Nacional de Saúde Pública]]></publisher-name>
</publisher>
</journal-meta>
<article-meta>
<article-id>S2504-31452023000200132</article-id>
<article-id pub-id-type="doi">10.1159/000531447</article-id>
<title-group>
<article-title xml:lang="en"><![CDATA[A Systematic Literature Review to Identify Patient Registries in Portugal]]></article-title>
<article-title xml:lang="pt"><![CDATA[Revisão sistemática da literatura para identificação dos registos de doentes em Portugal]]></article-title>
</title-group>
<contrib-group>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Pedrosa]]></surname>
<given-names><![CDATA[Hugo]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Pereira]]></surname>
<given-names><![CDATA[Fábio]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Carrilho]]></surname>
<given-names><![CDATA[Magda]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Martins]]></surname>
<given-names><![CDATA[Catarina]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Martins]]></surname>
<given-names><![CDATA[Ricardo]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Cruz]]></surname>
<given-names><![CDATA[Pedro]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
</contrib-group>
<aff id="Af1">
<institution><![CDATA[,IQVIA Solutions Portugal Real-World Analytics Solutions ]]></institution>
<addr-line><![CDATA[Porto Salvo ]]></addr-line>
<country>Portugal</country>
</aff>
<pub-date pub-type="pub">
<day>00</day>
<month>09</month>
<year>2023</year>
</pub-date>
<pub-date pub-type="epub">
<day>00</day>
<month>09</month>
<year>2023</year>
</pub-date>
<volume>41</volume>
<numero>2</numero>
<fpage>132</fpage>
<lpage>139</lpage>
<copyright-statement/>
<copyright-year/>
<self-uri xlink:href="http://scielo.pt/scielo.php?script=sci_arttext&amp;pid=S2504-31452023000200132&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://scielo.pt/scielo.php?script=sci_abstract&amp;pid=S2504-31452023000200132&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://scielo.pt/scielo.php?script=sci_pdf&amp;pid=S2504-31452023000200132&amp;lng=en&amp;nrm=iso"></self-uri><abstract abstract-type="short" xml:lang="en"><p><![CDATA[Abstract  Introduction:  Patient registries are one of the main sources of real-world data (RWD), which enables different healthcare stakeholders to analyse and benchmark clinical practice and foster better care. Despite the growing need for RWD, the current use of patient registries in Portugal is not fully understood. This study aimed to identify and provide an overview of patient registries in Portugal.  Methods:  Registries identification included a systematic literature review (SLR) using PRISMA© methodology. An electronic search was conducted in Embase®, MEDLINE©, and Cochrane Ovid® software, considering a set of rules and relevant search terms. Patient registries and databases, hospital, primary healthcare, and population-based studies between January 1955 and March 2021 were considered while randomized controlled trials and transversal observational studies were excluded. A manual review for validation was performed to identify unique registries. To complement SLR, an additional hand search was conducted using the Google® search engine. A literature and website search was conducted to provide an overview of the registries identified.  Results:  From the 108 unique registries, 76 (70%) were classified as national and 32 (30%) as international (with data collected from the Portuguese population). Most national registries were found to be owned by medical societies and health authorities (88%) and are predominantly implemented in hospitals (82%). National registries cover 18 different medical specialities, mostly Cardiology and Oncology.  Discussion:  This study identified and provided an overview of the registries collecting data from the Portuguese population. The study results aim to improve the information available to promote the increased utility of RWD at both national and international levels. In the future, an easy-access and centralized repository, aggregating all patient registries, should be created in Portugal to disseminate information. Additionally, an in-depth characterization of the 76 national registries must be performed to better understand and clarify their potential and usefulness.]]></p></abstract>
<abstract abstract-type="short" xml:lang="pt"><p><![CDATA[Resumo  Introdução:  Os registos de doentes são uma das principais fontes de dados do mundo real (RWD). Estes permitem que os diferentes intervenientes da área da saúde analisem e avaliem a prática clínica existente, e promovam melhores cuidados. Apesar da crescente necessidade de RWD, o atual contexto dos registos de doentes em Portugal não é totalmente conhecido. Este estudo visa identificar e providenciar uma visão geral dos diferentes registos de doentes em Portugal.  Métodos:  A identificação dos registos incluiu uma revisão sistemática da literatura (SLR) utilizando a metodologia PRISMA©. Realizou-se uma pesquisa eletrónica no Embase®, Medline©, e Cochrane©, utilizando o software Ovid® e considerando um conjunto de regras e termos de pesquisa relevantes. Registos de doentes, estudos de bases de dados, estudos hospitalares, estudos implementados nos cuidados de saúde primários e estudos de base populacional entre janeiro de 1955 e março de 2021 foram considerados, tendo sido excluídos os ensaios clínicos e os estudos observacionais transversais. Procedeu-se a uma revisão manual de validação com o intuito de compilar e identificar registos únicos. Para complementar o SLR, foi realizada uma pesquisa adicional de outras fontes usando o motor de pesquisa Google®. Foi realizada uma pesquisa adicional na literatura e em websites para permitir uma classificação geral de cada registo identificado.  Resultados:  Dos 108 registos únicos identificados, 76 (70%) foram classificados como nacionais e 32 (30%) como internacionais (com dados recolhidos da população portuguesa). Os resultados revelaram que a maioria dos registos nacionais pertence a sociedades médicas e autoridades de saúde (88%) e são predominantemente implementados em hospitais (82%). Os registos nacionais abrangem 18 especialidades médicas diferentes, sendo a Cardiologia e a Oncologia as que têm maior número de registos.  Discussão:  Este estudo permitiu identificar e ter uma visão geral dos registos que recolhem dados sobre a população portuguesa. Os resultados deste estudo visam melhorar a informação disponível e promover uma maior utilidade do RWD a nível nacional e internacional. No futuro, deverá ser criado em Portugal um repositório centralizado e de fácil acesso para disseminar a informação. Adicionalmente, deverá ser feita uma caracterização aprofundada dos 76 registos nacionais para melhor compreender e clarificar o seu potencial, a sua utilidade e determinar quais os fatores que irão emergir como essenciais.]]></p></abstract>
<kwd-group>
<kwd lng="en"><![CDATA[Real-world evidence]]></kwd>
<kwd lng="en"><![CDATA[Real-world data]]></kwd>
<kwd lng="en"><![CDATA[Patient registries]]></kwd>
<kwd lng="en"><![CDATA[Portugal]]></kwd>
<kwd lng="pt"><![CDATA[Evidências do mundo real]]></kwd>
<kwd lng="pt"><![CDATA[Dados do mundo real]]></kwd>
<kwd lng="pt"><![CDATA[Registos de doentes]]></kwd>
<kwd lng="pt"><![CDATA[Portugal]]></kwd>
</kwd-group>
</article-meta>
</front><back>
<ref-list>
<ref id="B1">
<label>1</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Khosla]]></surname>
<given-names><![CDATA[S]]></given-names>
</name>
<name>
<surname><![CDATA[White]]></surname>
<given-names><![CDATA[R]]></given-names>
</name>
<name>
<surname><![CDATA[Medina]]></surname>
<given-names><![CDATA[J]]></given-names>
</name>
<name>
<surname><![CDATA[Ouwens]]></surname>
<given-names><![CDATA[M]]></given-names>
</name>
<name>
<surname><![CDATA[Emmas]]></surname>
<given-names><![CDATA[C]]></given-names>
</name>
<name>
<surname><![CDATA[Koder]]></surname>
<given-names><![CDATA[T]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Real-world evidence (RWE) a disruptive innovation or the quiet evolution of medical evidence generation? F1000Res]]></article-title>
<source><![CDATA[FRes]]></source>
<year>2018</year>
<volume>7</volume>
<page-range>111</page-range></nlm-citation>
</ref>
<ref id="B2">
<label>2</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Laires]]></surname>
<given-names><![CDATA[P]]></given-names>
</name>
<name>
<surname><![CDATA[Barros]]></surname>
<given-names><![CDATA[V]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[RegisPt registry of registries in Portugal: design, data model, and functionalities]]></article-title>
<source><![CDATA[Port J Public Heal]]></source>
<year>2017</year>
<volume>35</volume>
<numero>2</numero>
<issue>2</issue>
<page-range>126-31</page-range></nlm-citation>
</ref>
<ref id="B3">
<label>3</label><nlm-citation citation-type="book">
<collab>Wall DRIA</collab>
<source><![CDATA[Planning a registry. in: Methodological guidelines and recommendations for efficient and rational governance of patient registries]]></source>
<year>2015</year>
<page-range>83106</page-range><publisher-name><![CDATA[National Institute of Public Health]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B4">
<label>4</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Suvarna]]></surname>
<given-names><![CDATA[V]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Real-world evidence (RWE) are we (RWE) ready]]></article-title>
<source><![CDATA[Perspect Clin Res]]></source>
<year>2018</year>
<volume>9</volume>
<numero>2</numero>
<issue>2</issue>
<page-range>61-3</page-range></nlm-citation>
</ref>
<ref id="B5">
<label>5</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Nallamothu]]></surname>
<given-names><![CDATA[BK]]></given-names>
</name>
<name>
<surname><![CDATA[Hayward]]></surname>
<given-names><![CDATA[RABE]]></given-names>
</name>
<name>
<surname><![CDATA[Bates]]></surname>
<given-names><![CDATA[ER]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Beyond the randomized clinical trial the role of effectiveness studies in evaluating cardiovascular therapies]]></article-title>
<source><![CDATA[Circulation]]></source>
<year>2008</year>
<volume>118</volume>
<numero>12</numero>
<issue>12</issue>
<page-range>1294-303</page-range></nlm-citation>
</ref>
<ref id="B6">
<label>6</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Rudrapatna]]></surname>
<given-names><![CDATA[V]]></given-names>
</name>
<name>
<surname><![CDATA[Butte]]></surname>
<given-names><![CDATA[A]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Opportunities and challenges in using real-world data for health care]]></article-title>
<source><![CDATA[J Clin Invest]]></source>
<year>2020</year>
<volume>130</volume>
<numero>2</numero>
<issue>2</issue>
<page-range>565-74</page-range></nlm-citation>
</ref>
<ref id="B7">
<label>7</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Cave]]></surname>
<given-names><![CDATA[A]]></given-names>
</name>
<name>
<surname><![CDATA[Kurz]]></surname>
<given-names><![CDATA[X]]></given-names>
</name>
<name>
<surname><![CDATA[Arlett]]></surname>
<given-names><![CDATA[P]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Real-world data for regulatory decision making challenges and possible Solutions for Europe]]></article-title>
<source><![CDATA[Clin Pharmacol Ther]]></source>
<year>2019</year>
<volume>106</volume>
<numero>1</numero>
<issue>1</issue>
<page-range>36-9</page-range></nlm-citation>
</ref>
<ref id="B8">
<label>8</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[McGettigan]]></surname>
<given-names><![CDATA[P]]></given-names>
</name>
<name>
<surname><![CDATA[Alonso Olmo]]></surname>
<given-names><![CDATA[C]]></given-names>
</name>
<name>
<surname><![CDATA[Plueschke]]></surname>
<given-names><![CDATA[K]]></given-names>
</name>
<name>
<surname><![CDATA[Castillon]]></surname>
<given-names><![CDATA[M]]></given-names>
</name>
<name>
<surname><![CDATA[Nogueras Zondag]]></surname>
<given-names><![CDATA[D]]></given-names>
</name>
<name>
<surname><![CDATA[Bahri]]></surname>
<given-names><![CDATA[P]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Patient registries an underused resource for medicines evaluation: operational proposals for increasing the use of patient registries in regulatory assessments]]></article-title>
<source><![CDATA[Drug Saf]]></source>
<year>2019</year>
<volume>42</volume>
<numero>11</numero>
<issue>11</issue>
<page-range>1343-51</page-range></nlm-citation>
</ref>
<ref id="B9">
<label>9</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Hoque]]></surname>
<given-names><![CDATA[D]]></given-names>
</name>
<name>
<surname><![CDATA[Kumari]]></surname>
<given-names><![CDATA[V]]></given-names>
</name>
<name>
<surname><![CDATA[Hoque]]></surname>
<given-names><![CDATA[M]]></given-names>
</name>
<name>
<surname><![CDATA[Ruseckaite]]></surname>
<given-names><![CDATA[R]]></given-names>
</name>
<name>
<surname><![CDATA[Romero]]></surname>
<given-names><![CDATA[L]]></given-names>
</name>
<name>
<surname><![CDATA[Evans]]></surname>
<given-names><![CDATA[SM]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Impact of clinical registries on quality of patient care and clinical outcomes a systematic review]]></article-title>
<source><![CDATA[PLoS One]]></source>
<year>2017</year>
<volume>12</volume>
<numero>9</numero>
<issue>9</issue>
</nlm-citation>
</ref>
<ref id="B10">
<label>10</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Breckenridge]]></surname>
<given-names><![CDATA[K]]></given-names>
</name>
<name>
<surname><![CDATA[Bekker]]></surname>
<given-names><![CDATA[H]]></given-names>
</name>
<name>
<surname><![CDATA[Gibbons]]></surname>
<given-names><![CDATA[E]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[How to routinely collect data on patient-reported outcome and experience measures in renal registries in Europe an expert consensus meeting]]></article-title>
<collab>Van Der Veer S.Abbott D.Briançon S</collab>
<source><![CDATA[Nephrol Dial Transpl]]></source>
<year>2015</year>
<volume>30</volume>
<numero>10</numero>
<issue>10</issue>
<page-range>1605-14</page-range></nlm-citation>
</ref>
<ref id="B11">
<label>11</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Franklin]]></surname>
<given-names><![CDATA[P]]></given-names>
</name>
<name>
<surname><![CDATA[Lewallen]]></surname>
<given-names><![CDATA[D]]></given-names>
</name>
<name>
<surname><![CDATA[Bozic]]></surname>
<given-names><![CDATA[K]]></given-names>
</name>
<name>
<surname><![CDATA[Hallstrom]]></surname>
<given-names><![CDATA[B]]></given-names>
</name>
<name>
<surname><![CDATA[Jiranek]]></surname>
<given-names><![CDATA[W]]></given-names>
</name>
<name>
<surname><![CDATA[Ayers]]></surname>
<given-names><![CDATA[D]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Implementation of patient-reported outcome measures in US total joint replacement registries: rationale, status, and plans]]></article-title>
<source><![CDATA[J Bone Jt Surg Am]]></source>
<year>2014</year>
<volume>96</volume>
</nlm-citation>
</ref>
<ref id="B12">
<label>12</label><nlm-citation citation-type="book">
<collab>RE DNLMG</collab>
<source><![CDATA[Registries for evaluating patient outcomes: a user's guide]]></source>
<year>2020</year>
<publisher-name><![CDATA[Agency Heal Care Res Qual]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B13">
<label>13</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Madhok]]></surname>
<given-names><![CDATA[R]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Crossing the quality chasm lessons from health care quality improvement efforts in England]]></article-title>
<source><![CDATA[Save Proc]]></source>
<year>2002</year>
<volume>15</volume>
<numero>1</numero>
<issue>1</issue>
<page-range>77-83</page-range></nlm-citation>
</ref>
<ref id="B14">
<label>14</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Lim]]></surname>
<given-names><![CDATA[T]]></given-names>
</name>
<name>
<surname><![CDATA[Goh]]></surname>
<given-names><![CDATA[A]]></given-names>
</name>
<name>
<surname><![CDATA[LIM]]></surname>
<given-names><![CDATA[Y]]></given-names>
</name>
<name>
<surname><![CDATA[Morad]]></surname>
<given-names><![CDATA[Z]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Review article use of renal registry data for research, health-care planning and quality improvement: what can we learn from registry data in the Asia - pacific region]]></article-title>
<source><![CDATA[J Nephrol]]></source>
<year>2008</year>
<volume>13</volume>
<numero>8</numero>
<issue>8</issue>
<page-range>745-52</page-range></nlm-citation>
</ref>
<ref id="B15">
<label>15</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Schechter]]></surname>
<given-names><![CDATA[M]]></given-names>
</name>
<name>
<surname><![CDATA[Fink]]></surname>
<given-names><![CDATA[A]]></given-names>
</name>
<name>
<surname><![CDATA[Homa]]></surname>
<given-names><![CDATA[K]]></given-names>
</name>
<name>
<surname><![CDATA[Goss]]></surname>
<given-names><![CDATA[C.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[The cystic fibrosis foundation patient registry as a tool for use in quality improvement]]></article-title>
<source><![CDATA[BMJ Qual Saf]]></source>
<year>2014</year>
<volume>23</volume>
</nlm-citation>
</ref>
<ref id="B16">
<label>16</label><nlm-citation citation-type="journal">
<collab>Centers for Disease Control and Prevention</collab>
<article-title xml:lang=""><![CDATA[Use of a registry to improve acute stroke care--seven states, 2005-2009]]></article-title>
<source><![CDATA[MMWR Morb Mortal Wkly Rep]]></source>
<year>2011</year>
<volume>60</volume>
<numero>7</numero>
<issue>7</issue>
<page-range>206-10</page-range></nlm-citation>
</ref>
<ref id="B17">
<label>17</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Lundstrom]]></surname>
<given-names><![CDATA[M]]></given-names>
</name>
<name>
<surname><![CDATA[Barry]]></surname>
<given-names><![CDATA[P]]></given-names>
</name>
<name>
<surname><![CDATA[Brocato]]></surname>
<given-names><![CDATA[L]]></given-names>
</name>
<name>
<surname><![CDATA[Fitzpatrick]]></surname>
<given-names><![CDATA[C]]></given-names>
</name>
<name>
<surname><![CDATA[Henry]]></surname>
<given-names><![CDATA[Y]]></given-names>
</name>
<name>
<surname><![CDATA[Rosen]]></surname>
<given-names><![CDATA[P]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[European registry for quality improvement in cataract surgery]]></article-title>
<source><![CDATA[Int J Heal Care Qual]]></source>
<year>2014</year>
<volume>27</volume>
<numero>2</numero>
<issue>2</issue>
<page-range>140-51</page-range></nlm-citation>
</ref>
<ref id="B18">
<label>18</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Fonarow]]></surname>
<given-names><![CDATA[G]]></given-names>
</name>
<name>
<surname><![CDATA[Albert]]></surname>
<given-names><![CDATA[N]]></given-names>
</name>
<name>
<surname><![CDATA[Curtis]]></surname>
<given-names><![CDATA[A]]></given-names>
</name>
<name>
<surname><![CDATA[Stough]]></surname>
<given-names><![CDATA[W]]></given-names>
</name>
<name>
<surname><![CDATA[Gheorghiade]]></surname>
<given-names><![CDATA[M]]></given-names>
</name>
<name>
<surname><![CDATA[Heywood]]></surname>
<given-names><![CDATA[J]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Improving evidence-based care for heart failure in outpatient cardiology practices primary results of the registry to Improve the Use of Evidence-Based Heart Failure Therapies in the Outpatient Setting (IMPROVE HF)]]></article-title>
<source><![CDATA[Circulation]]></source>
<year>2010</year>
<volume>122</volume>
<numero>6</numero>
<issue>6</issue>
<page-range>585-96</page-range></nlm-citation>
</ref>
<ref id="B19">
<label>19</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Larsson]]></surname>
<given-names><![CDATA[S]]></given-names>
</name>
<name>
<surname><![CDATA[Lawyer]]></surname>
<given-names><![CDATA[P]]></given-names>
</name>
<name>
<surname><![CDATA[Garellick]]></surname>
<given-names><![CDATA[G]]></given-names>
</name>
<name>
<surname><![CDATA[Lindahl]]></surname>
<given-names><![CDATA[B]]></given-names>
</name>
<name>
<surname><![CDATA[Lundstrom]]></surname>
<given-names><![CDATA[M]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Use of 13 disease registries in 5 countries demonstrates the potential to use outcome data to improve health care's value]]></article-title>
<source><![CDATA[Heal Aff]]></source>
<year>2012</year>
<volume>31</volume>
<numero>1</numero>
<issue>1</issue>
<page-range>220-7</page-range></nlm-citation>
</ref>
<ref id="B20">
<label>20</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Hickey]]></surname>
<given-names><![CDATA[G]]></given-names>
</name>
<name>
<surname><![CDATA[Grant]]></surname>
<given-names><![CDATA[S]]></given-names>
</name>
<name>
<surname><![CDATA[Cosgriff]]></surname>
<given-names><![CDATA[R]]></given-names>
</name>
<name>
<surname><![CDATA[Dimarakis]]></surname>
<given-names><![CDATA[I]]></given-names>
</name>
<name>
<surname><![CDATA[Pagano]]></surname>
<given-names><![CDATA[D]]></given-names>
</name>
<name>
<surname><![CDATA[Kappetein]]></surname>
<given-names><![CDATA[A]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Clinical registries governance, management, analysis and applications]]></article-title>
<source><![CDATA[Eur J Cardio Thorac Surg]]></source>
<year>2013</year>
<volume>44</volume>
<numero>4</numero>
<issue>4</issue>
<page-range>605-14</page-range></nlm-citation>
</ref>
<ref id="B21">
<label>21</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Bufalino]]></surname>
<given-names><![CDATA[V]]></given-names>
</name>
<name>
<surname><![CDATA[Masoudi]]></surname>
<given-names><![CDATA[F]]></given-names>
</name>
<name>
<surname><![CDATA[Stranne]]></surname>
<given-names><![CDATA[S]]></given-names>
</name>
<name>
<surname><![CDATA[Horton]]></surname>
<given-names><![CDATA[K]]></given-names>
</name>
<name>
<surname><![CDATA[Albert]]></surname>
<given-names><![CDATA[N]]></given-names>
</name>
<name>
<surname><![CDATA[Beam]]></surname>
<given-names><![CDATA[C]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[The American Heart Association's recommendations for expanding the applications of existing and future clinical registries a policy statement from the American heart association]]></article-title>
<source><![CDATA[Circulation]]></source>
<year>2011</year>
<volume>123</volume>
<numero>19</numero>
<issue>19</issue>
<page-range>2167-79</page-range></nlm-citation>
</ref>
<ref id="B22">
<label>22</label><nlm-citation citation-type="book">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Peterson]]></surname>
<given-names><![CDATA[E]]></given-names>
</name>
</person-group>
<source><![CDATA[Research methods to speed the development of better evidence-the registries example]]></source>
<year>2007</year>
<publisher-loc><![CDATA[Washington, DC ]]></publisher-loc>
<publisher-name><![CDATA[National Academies Press]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B23">
<label>23</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[McGinnis]]></surname>
<given-names><![CDATA[J]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Engineering the system of healthcare delivery]]></article-title>
<source><![CDATA[Inf Syst Manag]]></source>
<year>2009</year>
</nlm-citation>
</ref>
<ref id="B24">
<label>24</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Spertus]]></surname>
<given-names><![CDATA[J]]></given-names>
</name>
<name>
<surname><![CDATA[Peterson]]></surname>
<given-names><![CDATA[E]]></given-names>
</name>
<name>
<surname><![CDATA[Rumsfeld]]></surname>
<given-names><![CDATA[J]]></given-names>
</name>
<name>
<surname><![CDATA[Jones]]></surname>
<given-names><![CDATA[P]]></given-names>
</name>
<name>
<surname><![CDATA[Decker]]></surname>
<given-names><![CDATA[C]]></given-names>
</name>
<name>
<surname><![CDATA[Krumholz]]></surname>
<given-names><![CDATA[H]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[The prospective registry evaluating myocardial infarction events and recovery (PREMIER) - evaluating the impact of myocardial infarction on patient outcomes]]></article-title>
<source><![CDATA[Am Hear J]]></source>
<year>2006</year>
<volume>151</volume>
<numero>3</numero>
<issue>3</issue>
<page-range>589-97</page-range></nlm-citation>
</ref>
<ref id="B25">
<label>25</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[French]]></surname>
<given-names><![CDATA[W]]></given-names>
</name>
<name>
<surname><![CDATA[Reddy]]></surname>
<given-names><![CDATA[V]]></given-names>
</name>
<name>
<surname><![CDATA[Barron]]></surname>
<given-names><![CDATA[H]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Transforming quality of care and improving outcomes after acute MI lessons from the National Registry of Myocardial Infarction]]></article-title>
<source><![CDATA[JAMA]]></source>
<year>2012</year>
<volume>308</volume>
<numero>8</numero>
<issue>8</issue>
<page-range>771-2</page-range></nlm-citation>
</ref>
<ref id="B26">
<label>26</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Jorgensen]]></surname>
<given-names><![CDATA[J]]></given-names>
</name>
<name>
<surname><![CDATA[Hanna]]></surname>
<given-names><![CDATA[E]]></given-names>
</name>
<name>
<surname><![CDATA[Kefalas]]></surname>
<given-names><![CDATA[P]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Outcomes-based reimbursement for gene therapies in practice the experience of recently launched CAR-T cell therapies in major European countries]]></article-title>
<source><![CDATA[J Mark Access Heal Policy]]></source>
<year>2020</year>
<volume>8</volume>
<numero>1</numero>
<issue>1</issue>
<page-range>1715536</page-range></nlm-citation>
</ref>
<ref id="B27">
<label>27</label><nlm-citation citation-type="">
<collab>Ordem dos Médicos</collab>
<source><![CDATA[Colégio de Especialidade]]></source>
<year>2021</year>
</nlm-citation>
</ref>
<ref id="B28">
<label>28</label><nlm-citation citation-type="">
<collab>Admnistration</collab>
<source><![CDATA[USF and D. Real-world data (RWD) and real-world evidence (RWE) are playing an increasing role in health care decisions]]></source>
<year>2022</year>
</nlm-citation>
</ref>
<ref id="B29">
<label>29</label><nlm-citation citation-type="book">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Cavlan]]></surname>
<given-names><![CDATA[O]]></given-names>
</name>
<name>
<surname><![CDATA[Chilukuri]]></surname>
<given-names><![CDATA[S]]></given-names>
</name>
<name>
<surname><![CDATA[Evers]]></surname>
<given-names><![CDATA[M]]></given-names>
</name>
<name>
<surname><![CDATA[Westra]]></surname>
<given-names><![CDATA[A]]></given-names>
</name>
</person-group>
<source><![CDATA[Real-world evidence: from activity to impact in healthcare decision making]]></source>
<year>2018</year>
<publisher-name><![CDATA[McKinsey and Company]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B30">
<label>30</label><nlm-citation citation-type="book">
<collab>OECD</collab>
<collab>WHO</collab>
<source><![CDATA[State of health in the EU - Portugal - country health profile 2017]]></source>
<year>2017</year>
<publisher-name><![CDATA[OECD and World Health Organization]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B31">
<label>31</label><nlm-citation citation-type="book">
<collab>Instituto Nacional de Estatística</collab>
<source><![CDATA[I. Estatísticas da Saúde - 2019]]></source>
<year>2019</year>
<publisher-name><![CDATA[Instituto Nacional de Estatística]]></publisher-name>
</nlm-citation>
</ref>
</ref-list>
</back>
</article>
