<?xml version="1.0" encoding="UTF-8"?>
<crossref_result xmlns="http://www.crossref.org/qrschema/3.0" version="3.0" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance" xsi:schemaLocation="http://www.crossref.org/qrschema/3.0 http://www.crossref.org/schemas/crossref_query_output3.0.xsd">
  <query_result>
    <head>
      <doi_batch_id>none</doi_batch_id>
    </head>
    <body>
      <query status="resolved">
        <doi type="journal_article">10.6061/clinics/2018/e68</doi>
        <crm-item name="publisher-name" type="string">Elsevier BV</crm-item>
        <crm-item name="prefix-name" type="string">Elsevier</crm-item>
        <crm-item name="member-id" type="number">78</crm-item>
        <crm-item name="citation-id" type="number">98148852</crm-item>
        <crm-item name="journal-id" type="number">45578</crm-item>
        <crm-item name="deposit-timestamp" type="number">2025102811192900000</crm-item>
        <crm-item name="owner-prefix" type="string">10.1016</crm-item>
        <crm-item name="last-update" type="date">2025-10-29T06:58:23Z</crm-item>
        <crm-item name="created" type="date">2018-04-29T13:10:36Z</crm-item>
        <crm-item name="citedby-count" type="number">42</crm-item>
        <doi_record>
          <crossref xmlns="http://www.crossref.org/xschema/1.1" xsi:schemaLocation="http://www.crossref.org/xschema/1.1 http://doi.crossref.org/schemas/unixref1.1.xsd">
            <journal>
              <journal_metadata language="en">
                <full_title>Clinics</full_title>
                <abbrev_title>Clinics</abbrev_title>
                <issn media_type="print">18075932</issn>
              </journal_metadata>
              <journal_issue>
                <publication_date media_type="print">
                  <year>2018</year>
                </publication_date>
                <journal_volume>
                  <volume>73</volume>
                </journal_volume>
                <special_numbering>C</special_numbering>
              </journal_issue>
              <journal_article publication_type="full_text">
                <titles>
                  <title>Difficulties in the diagnosis and treatment of rare diseases according to the perceptions of patients, relatives and health care professionals</title>
                </titles>
                <contributors>
                  <person_name sequence="first" contributor_role="author">
                    <given_name>Marcos Thomazin</given_name>
                    <surname>Lopes</surname>
                  </person_name>
                  <person_name sequence="additional" contributor_role="author">
                    <given_name>Vera Hermina</given_name>
                    <surname>Koch</surname>
                  </person_name>
                  <person_name sequence="additional" contributor_role="author">
                    <given_name>Vicente</given_name>
                    <surname>Sarrubbi-Junior</surname>
                  </person_name>
                  <person_name sequence="additional" contributor_role="author">
                    <given_name>Paulo Rogério</given_name>
                    <surname>Gallo</surname>
                  </person_name>
                  <person_name sequence="additional" contributor_role="author">
                    <given_name>Magda</given_name>
                    <surname>Carneiro-Sampaio</surname>
                  </person_name>
                </contributors>
                <publication_date media_type="print">
                  <year>2018</year>
                </publication_date>
                <pages>
                  <first_page>e68</first_page>
                </pages>
                <publisher_item>
                  <item_number item_number_type="sequence-number">S1807593222005129</item_number>
                  <item_number item_number_type="article-number">e68</item_number>
                  <identifier id_type="pii">S1807593222005129</identifier>
                </publisher_item>
                <crossmark>
                  <crossmark_policy>10.1016/elsevier_cm_policy</crossmark_policy>
                  <crossmark_domains>
                    <crossmark_domain>
                      <domain>elsevier.com</domain>
                    </crossmark_domain>
                    <crossmark_domain>
                      <domain>sciencedirect.com</domain>
                    </crossmark_domain>
                  </crossmark_domains>
                  <crossmark_domain_exclusive>true</crossmark_domain_exclusive>
                  <custom_metadata>
                    <assertion name="publisher" label="This article is maintained by ">Elsevier</assertion>
                    <assertion name="articletitle" label="Article Title">Difficulties in the diagnosis and treatment of rare diseases according to the perceptions of patients, relatives and health care professionals</assertion>
                    <assertion name="journaltitle" label="Journal Title">Clinics</assertion>
                    <assertion name="articlelink" label="CrossRef DOI link to publisher maintained version">https://doi.org/10.6061/clinics/2018/e68</assertion>
                    <assertion name="content_type" label="Content Type">article</assertion>
                    <assertion name="copyright" label="Copyright">Copyright © 2018 CLINICS. Published by Elsevier Spain</assertion>
                    <ai:program xmlns:ai="http://www.crossref.org/AccessIndicators.xsd" name="AccessIndicators">
                      <ai:license_ref applies_to="tdm">https://www.elsevier.com/tdm/userlicense/1.0/</ai:license_ref>
                      <ai:license_ref applies_to="tdm">https://www.elsevier.com/legal/tdmrep-license</ai:license_ref>
                      <ai:license_ref start_date="2018-12-31" applies_to="vor">https://creativecommons.org/licenses/by/4.0/</ai:license_ref>
                    </ai:program>
                  </custom_metadata>
                </crossmark>
                <doi_data>
                  <doi>10.6061/clinics/2018/e68</doi>
                  <resource>https://linkinghub.elsevier.com/retrieve/pii/S1807593222005129</resource>
                  <collection property="text-mining">
                    <item>
                      <resource mime_type="text/xml">https://api.elsevier.com/content/article/PII:S1807593222005129?httpAccept=text/xml</resource>
                    </item>
                    <item>
                      <resource mime_type="text/plain">https://api.elsevier.com/content/article/PII:S1807593222005129?httpAccept=text/plain</resource>
                    </item>
                  </collection>
                  <collection property="link-header">
                    <item link_header_relationship="dul">
                      <resource>https://dul.usage.elsevier.com/doi/</resource>
                    </item>
                  </collection>
                  <collection property="list-based" multi-resolution="unlock">
                    <item label="SCIELO" setbyID="clinics">
                      <resource>http://www.scielo.br/scielo.php?script=sci_arttext&amp;pid=S1807-59322018000100212&amp;lng=en&amp;nrm=iso&amp;tlng=en</resource>
                    </item>
                    <item label="CLINICS" setbyID="clinics">
                      <resource>https://www.clinicsjournal.com/article/difficulties-in-the-diagnosis-and-treatment-of-rare-diseases-according-to-the-perceptions-of-patients-relatives-and-health-care-professionals/</resource>
                    </item>
                  </collection>
                </doi_data>
                <citation_list>
                  <citation key="10.6061/clinics/2018/e68_bib1">
                    <journal_title>Arch Dis Child</journal_title>
                    <author>Zurynski</author>
                    <volume>93</volume>
                    <issue>12</issue>
                    <first_page>1071</first_page>
                    <cYear>2008</cYear>
                    <doi provider="crossref">10.1136/adc.2007.134940</doi>
                    <article_title>Rare childhood diseases: how should we respond</article_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib2">
                    <journal_title>Arch Dis Child</journal_title>
                    <author>Guillem</author>
                    <volume>93</volume>
                    <issue>2</issue>
                    <first_page>115</first_page>
                    <cYear>2008</cYear>
                    <doi provider="crossref">10.1136/adc.2006.104455</doi>
                    <article_title>Rare diseases in disabled children: an epidemiological survey</article_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib3">
                    <journal_title>Health Policy</journal_title>
                    <author>Denis</author>
                    <volume>97</volume>
                    <issue>2-3</issue>
                    <first_page>173</first_page>
                    <cYear>2010</cYear>
                    <doi provider="crossref">10.1016/j.healthpol.2010.05.017</doi>
                    <article_title>A comparative study of European rare disease and orphan drug markets</article_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib4">
                    <journal_title>Rare Dis</journal_title>
                    <author>Bavisetty</author>
                    <volume>1</volume>
                    <cYear>2013</cYear>
                    <article_title>Emergence of pediatric rare diseases: Review of presents policies and opportunities for improvement</article_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib5">
                    <journal_title>Rev Saúde Pública</journal_title>
                    <author>Vieira</author>
                    <volume>41</volume>
                    <issue>2</issue>
                    <first_page>214</first_page>
                    <cYear>2007</cYear>
                    <doi provider="crossref">10.1590/S0034-89102007000200007</doi>
                    <article_title>Distorções causadas pelas ações judiciais à política de medicamentos no Brasil</article_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib6">
                    <journal_title>Rev Med Minas Gerais</journal_title>
                    <author>Andrade</author>
                    <volume>18</volume>
                    <issue>Supl 4</issue>
                    <first_page>S46</first_page>
                    <cYear>2008</cYear>
                    <article_title>A judicialização da saúde e a política nacional de assistência farmacêutica no Brasil: gestão da clínica e medicalização da justiça</article_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib7">
                    <author>Gaskell</author>
                    <first_page>64</first_page>
                    <cYear>2002</cYear>
                    <series_title>Pesquisa qualitativa com texto, imagem e som: um manual prático</series_title>
                    <article_title>Entrevistas individuais e grupais</article_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib8">
                    <journal_title>O Mundo da Saúde, São Paulo</journal_title>
                    <author>Backes</author>
                    <volume>35</volume>
                    <issue>4</issue>
                    <first_page>438</first_page>
                    <cYear>2011</cYear>
                    <doi provider="crossref">10.15343/0104-7809.2011354438442</doi>
                    <article_title>Grupo focal como técnica de coleta e análise de dados em pesquisas qualitativas</article_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib9">
                    <author>Barbour</author>
                    <cYear>2009</cYear>
                    <series_title>Grupos Focais</series_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib10">
                    <journal_title>Physis Rev Saúde Coletiva</journal_title>
                    <author>Bomfim</author>
                    <volume>19</volume>
                    <first_page>777</first_page>
                    <cYear>2009</cYear>
                    <doi provider="crossref">10.1590/S0103-73312009000300013</doi>
                    <article_title>Grupos focais: conceitos, procedimentos e reflexões baseadas em experiências com o uso da técnica em pesquisas de saúde</article_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib11">
                    <journal_title>Rev Enferm UERJ</journal_title>
                    <author>Oliveira</author>
                    <volume>16</volume>
                    <issue>4</issue>
                    <first_page>569</first_page>
                    <cYear>2008</cYear>
                    <article_title>Análise de Conteúdo Temático-Categorial: uma proposta de sistematização</article_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib12">
                    <author>Bardin</author>
                    <cYear>2007</cYear>
                    <series_title>Análise de conteúdo</series_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib13">
                    <author>QRS International</author>
                    <cYear>2013</cYear>
                    <series_title>NVIVO10 for Windows: tutorial em português</series_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib14">
                    <author>Duarte</author>
                    <cYear>2009</cYear>
                    <series_title>A possibilidade da investigação a 3: reflexões sobre triangulação (metodológica)</series_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib15">
                    <journal_title>Issues Compr Pediatr Nurs</journal_title>
                    <author>Goble</author>
                    <volume>27</volume>
                    <issue>3</issue>
                    <first_page>153</first_page>
                    <cYear>2004</cYear>
                    <doi provider="crossref">10.1080/01460860490497787</doi>
                    <article_title>The impact of a child’s chronic illness on fathers</article_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib16">
                    <journal_title>J Adv Nursing</journal_title>
                    <author>Fisher</author>
                    <volume>36</volume>
                    <issue>4</issue>
                    <first_page>600</first_page>
                    <cYear>2001</cYear>
                    <doi provider="crossref">10.1046/j.1365-2648.2001.02013.x</doi>
                    <article_title>The needs of parents with chronically sick children: a literature review</article_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib17">
                    <journal_title>J Adv Nurs</journal_title>
                    <author>Dellve</author>
                    <volume>53</volume>
                    <issue>4</issue>
                    <first_page>392</first_page>
                    <cYear>2006</cYear>
                    <doi provider="crossref">10.1111/j.1365-2648.2006.03736.x</doi>
                    <article_title>Stress and well-being among parents of children with rare diseases: a prospective intervention study</article_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib18">
                    <journal_title>Pediatr Nurs</journal_title>
                    <author>Coffey</author>
                    <volume>32</volume>
                    <issue>1</issue>
                    <first_page>51</first_page>
                    <cYear>2006</cYear>
                    <article_title>Parenting a child with chronic illness: a metasynthesis</article_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib19">
                    <journal_title>J Spec Pediatr Nurs</journal_title>
                    <author>Gallo</author>
                    <volume>13</volume>
                    <issue>1</issue>
                    <first_page>4</first_page>
                    <cYear>2008</cYear>
                    <doi provider="crossref">10.1111/j.1744-6155.2008.00129.x</doi>
                    <article_title>Parents’ concerns about issues related to their children’s genetic conditions</article_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib20">
                    <journal_title>Child Care Health Dev</journal_title>
                    <author>Graungaard</author>
                    <volume>33</volume>
                    <issue>3</issue>
                    <first_page>296</first_page>
                    <cYear>2007</cYear>
                    <doi provider="crossref">10.1111/j.1365-2214.2006.00666.x</doi>
                    <article_title>Why do we need a diagnosis? A qualitative study of parents’ experiences, coping and needs, when the newborn child is severely disabled</article_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib21">
                    <journal_title>Health Policy</journal_title>
                    <author>Budych</author>
                    <volume>105</volume>
                    <issue>2-3</issue>
                    <first_page>154</first_page>
                    <cYear>2012</cYear>
                    <doi provider="crossref">10.1016/j.healthpol.2012.02.018</doi>
                    <article_title>How do patients with rare diseases experience the medical encounter? Exploring role behavior and its impact on patient-physician interaction</article_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib22">
                    <journal_title>Cien Saude Colet</journal_title>
                    <author>de Souza</author>
                    <volume>15</volume>
                    <issue>Suppl 3</issue>
                    <first_page>3443</first_page>
                    <cYear>2010</cYear>
                    <doi provider="crossref">10.1590/S1413-81232010000900019</doi>
                    <article_title>Medicamentos de alto custo para doenças raras no Brasil: o exemplo das doenças lisossômicas</article_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib23">
                    <journal_title>Bull World Health Organ</journal_title>
                    <author>Stolk</author>
                    <volume>84</volume>
                    <issue>9</issue>
                    <first_page>745</first_page>
                    <cYear>2006</cYear>
                    <doi provider="crossref">10.2471/BLT.06.031518</doi>
                    <article_title>Rare essentials: drugs for rare diseases as essential medicines</article_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib24">
                    <journal_title>Cien Saude Colet</journal_title>
                    <author>Pepe</author>
                    <volume>15</volume>
                    <issue>5</issue>
                    <first_page>2405</first_page>
                    <cYear>2010</cYear>
                    <doi provider="crossref">10.1590/S1413-81232010000500015</doi>
                    <article_title>A judicialização da saúde e os novos desafios da gestão da assistência farmacêutica</article_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib25">
                    <journal_title>Cad Saude Publica</journal_title>
                    <author>Messeder</author>
                    <volume>21</volume>
                    <issue>2</issue>
                    <first_page>525</first_page>
                    <cYear>2005</cYear>
                    <doi provider="crossref">10.1590/S0102-311X2005000200019</doi>
                    <article_title>Mandados judiciais como ferramenta para garantia do acesso a medicamentos no setor público: a experiência do Estado do Rio de Janeiro, Brasil</article_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib26">
                    <journal_title>Rev de Direito Sanitário</journal_title>
                    <author>Marques</author>
                    <volume>9</volume>
                    <issue>2</issue>
                    <first_page>65</first_page>
                    <cYear>2008</cYear>
                    <doi provider="crossref">10.11606/issn.2316-9044.v9i2p65-72</doi>
                    <article_title>Judicalização do direito à saúde</article_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib27">
                    <author>Brasil. Ministério da Saúde</author>
                    <cYear>2014</cYear>
                    <series_title>Portaria 199</series_title>
                  </citation>
                  <citation key="10.6061/clinics/2018/e68_bib28">
                    <unstructured_citation>Brasil. Lei 13.146/15. Lei Brasileira de Inclusão, Estatuto da Pessoa com Deficiência</unstructured_citation>
                  </citation>
                </citation_list>
              </journal_article>
            </journal>
          </crossref>
        </doi_record>
      </query>
    </body>
  </query_result>
</crossref_result>