<?xml-model href="../../../core/DECOR.sch" type="application/xml" schematypens="http://purl.oclc.org/dsdl/schematron"?>
<decor xmlns:f="http://hl7.org/fhir" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance" xsi:noNamespaceSchemaLocation="../../../core/DECOR.xsd" f:dummy-0="http://hl7.org/fhir">
    <project id="2.16.840.1.113883.3.1937.99.60.12" prefix="demo12-" experimental="true" defaultLanguage="en-US">
        <name language="en-US" lastTranslated="2022-06-27T19:06:39">Demo 12: Examples of European Datasets</name>
        <name language="de-DE" lastTranslated="2022-06-27T19:06:39">Demo 12: Beispiele Europäischer Datensätze</name>
        <desc language="en-US" lastTranslated="2022-06-27T19:06:39">This is a demo project with examples of European Datasets for the purpose to generate Scenarios out of it and utilize derived Questionnaire/QuestionnaireResponse (FHIR artefacts, managed by the Questionnaires Panel)</desc>
        <desc language="de-DE">Dies ist ein Demoprojekt mit Beispielen europäischer Datensätze, um daraus Szenarien zu generieren und abgeleitete Fragebögen/Fragebogenantworten (FHIR-Artefakte, verwaltet vom Fragebogen-Panel) zu verwenden.</desc>
        <copyright years="2023-" by="The ART-DECOR Expert Group" type="author" logo="art-decor-logo2.png">
            <addrLine>The ART-DECOR Expert Group</addrLine>
            <addrLine type="email">info@art-decor.org</addrLine>
            <addrLine type="email">contact@art-decor.org</addrLine>
            <addrLine type="uri">https://art-decor.org</addrLine>
            <addrLine type="linkedin">https://www.linkedin.com/company/art-decor-org</addrLine>
            <addrLine type="twitter">https://twitter.com/artdecortool</addrLine>
        </copyright>
        <copyright years="2021-" by="ART-DECOR Open Tools GmbH" type="reviewer" logo="art-decor-open-tools.jpg">
            <addrLine>ART-DECOR Open Tools GmbH</addrLine>
            <addrLine type="email">info@art-decor-open-tools.net</addrLine>
            <addrLine type="uri">https://art-decor-open-tools.net</addrLine>
            <addrLine type="linkedin">https://www.linkedin.com/company/art-decor-open-tools</addrLine>
        </copyright>
        <author id="1" username="admin" notifier="off">Admin</author>
        <author id="2" username="kai" email="info@kheitmann.de" notifier="on" effectiveDate="2022-06-27T19:06:39">dr Kai Heitmann</author>
        <reference url="https://examples.art-decor.pub/demo12/"/>
        <restURI for="FHIR" format="4.0">https://art-decor.org/fhir/4.0/</restURI>
        <buildingBlockRepository url="http://art-decor.org/decor/services/" ident="ad1bbr-"/>
        <buildingBlockRepository url="http://art-decor.org/decor/services/" ident="ad2bbr-"/>
        <buildingBlockRepository url="http://art-decor.org/decor/services/" ident="ad3bbr-"/>
        <buildingBlockRepository url="http://art-decor.org/decor/services/" ident="hl7ips-"/>
    </project>
    <datasets>
        <dataset id="2.16.840.1.113883.3.1937.99.60.12.1.6" effectiveDate="2024-05-17T00:00:00" statusCode="draft" lastModifiedDate="2024-05-31T19:00:35">
            <name language="de-DE">Registrierung Seltener Erkrankungen</name>
            <name language="en-US">Rare Disease Registration</name>
            <desc language="de-DE">Europäische Plattform für die Registrierung Seltener Erkrankungen (EU-SK-Plattform) <p/> Set of Common Data Elements for Rare Disease Registration</desc>
            <desc language="en-US">European Platform on Rare Disease Registration - EU RD Platform <p/> Set of Common Data Elements for Rare Disease Registration </desc>
            <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.1" effectiveDate="2024-05-24T15:18:18" statusCode="draft" type="group" lastModifiedDate="2023-11-20T16:55:00">
                <name language="de-DE">Pseudonym</name>
                <name language="en-US">Pseudonym</name>
                <desc language="de-DE">Pseudonym</desc>
                <desc language="en-US">Pseudonym</desc>
                <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.11" effectiveDate="2024-05-17T17:34:59" statusCode="draft" type="item" lastModifiedDate="2023-11-20T16:55:00">
                    <name language="de-DE">Pseudonym</name>
                    <name language="en-US">Pseudonym</name>
                    <desc language="en-US">Patient's pseudonym</desc>
                    <desc language="de-DE">Pseudonym des Patienten</desc>
                    <valueDomain type="string"/>
                </concept>
            </concept>
            <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.2" effectiveDate="2024-05-24T15:20:25" statusCode="draft" type="group" lastModifiedDate="2023-12-05T18:04:03">
                <name language="de-DE">Persönliche Angaben</name>
                <name language="en-US">Personal information</name>
                <desc language="de-DE"/>
                <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.21" effectiveDate="2024-05-24T15:21:04" statusCode="draft" type="item" lastModifiedDate="2024-05-24T15:21:42">
                    <name language="de-DE">Geburtsdatum</name>
                    <name language="en-US">Date of birth</name>
                    <desc language="de-DE">Geburtsdatum des Patienten</desc>
                    <desc language="en-US">Patient's date of birth</desc>
                    <valueDomain type="date">
                        <property timeStampPrecision="YMD"/>
                        <example type="neutral">Date (dd/mm/yyyy)</example>
                    </valueDomain>
                </concept>
                <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.22" effectiveDate="2024-05-24T15:21:51" statusCode="draft" type="item" lastModifiedDate="2023-12-05T18:04:03">
                    <name language="en-US">Sex</name>
                    <name language="de-DE">Geschlecht</name>
                    <desc language="en-US">Patient's sex at birth</desc>
                    <desc language="de-DE">Geschlecht des Patienten bei der Geburt</desc>
                    <valueDomain type="code">
                        <conceptList id="2.16.840.1.113883.3.1937.99.60.12.2.6.22.20240524152151.0">
                            <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.22.20240524152151.1" exception="false">
                                <name language="de-DE">Weiblich</name>
                                <name language="en-US">Female</name>
                            </concept>
                            <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.22.20240524152151.2" exception="false">
                                <name language="de-DE">Männlich</name>
                                <name language="en-US">Male</name>
                            </concept>
                            <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.22.20240524152151.3" exception="false">
                                <name language="de-DE">Unbestimmt</name>
                                <name language="en-US">Undetermined</name>
                            </concept>
                            <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.22.20240524152151.4" exception="false">
                                <name language="de-DE">Fötus (unbekannt)</name>
                                <name language="en-US">Foetus (Unknown)</name>
                            </concept>
                        </conceptList>
                    </valueDomain>
                </concept>
            </concept>
            <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.3" effectiveDate="2024-05-24T15:26:31" statusCode="draft" type="group" lastModifiedDate="2023-12-08T14:50:20">
                <name language="de-DE">Patientenstatus</name>
                <name language="en-US">Patient Status</name>
                <desc language="de-DE">Patientenstatus</desc>
                <desc language="en-US">Patient Status</desc>
                <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.31" effectiveDate="2024-05-24T15:20:20" statusCode="draft" type="item" lastModifiedDate="2023-12-08T14:50:20">
                    <name language="de-DE">Patientenstatus</name>
                    <name language="en-US">Patient's status</name>
                    <desc language="de-DE">Lebender oder toter Patient</desc>
                    <desc language="en-US">Patient alive or dead</desc>
                    <operationalization language="de-DE">Falls tot, Frage 'Todeszeitpunkt' beantworten.</operationalization>
                    <operationalization language="en-US">If dead then answer question 'Date of death'</operationalization>
                    <valueDomain type="code">
                        <conceptList id="2.16.840.1.113883.3.1937.99.60.12.2.6.1646.20240524152020.0">
                            <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.1646.20240524152020.1">
                                <name language="en-US">Alive</name>
                                <name language="de-DE">Lebend</name>
                            </concept>
                            <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.1646.20240524152020.2">
                                <name language="en-US">Dead</name>
                                <name language="de-DE">Tot</name>
                            </concept>
                            <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.1646.20240524152020.3">
                                <name language="en-US">Lost in follow-up</name>
                                <name language="de-DE">Nicht weiterverfolgt</name>
                            </concept>
                            <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.1646.20240524152020.4">
                                <name language="en-US">Opted-out</name>
                                <name language="de-DE">Verweigert</name>
                            </concept>
                        </conceptList>
                    </valueDomain>
                </concept>
                <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.32" effectiveDate="2024-05-24T15:29:58" statusCode="draft" type="item" lastModifiedDate="2024-05-25T09:07:41">
                    <name language="de-DE">Todeszeitpunkt</name>
                    <name language="en-US">Date of death</name>
                    <desc language="de-DE">Sterbedatum des Patienten</desc>
                    <desc language="en-US">Patient's date of death</desc>
                    <valueDomain type="date">
                        <property timeStampPrecision="YMD"/>
                    </valueDomain>
                </concept>
            </concept>
            <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.4" effectiveDate="2024-05-24T15:31:31" statusCode="draft" type="group" lastModifiedDate="2023-12-08T14:57:29">
                <name language="de-DE">Behandlungsverlauf</name>
                <name language="en-US">Care pathway</name>
                <desc language="de-DE">Behandlungsverlauf</desc>
                <desc language="en-US">Care pathway</desc>
                <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.41" effectiveDate="2024-05-24T15:31:59" statusCode="draft" type="item" lastModifiedDate="2024-05-30T12:17:15">
                    <name language="de-DE">Erstkontakt mit dem Fachzentrum</name>
                    <name language="en-US">First contact with specialised centre</name>
                    <desc language="de-DE">Datum des ersten Kontakts mit dem Fachzentrum</desc>
                    <desc language="en-US">Date of first contact with specialised centre</desc>
                    <valueDomain type="date">
                        <property timeStampPrecision="YMD"/>
                    </valueDomain>
                </concept>
            </concept>
            <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.5" effectiveDate="2024-05-24T15:31:31" statusCode="draft" type="group" lastModifiedDate="2023-12-08T14:57:29">
                <name language="de-DE">Behandlungsverlauf</name>
                <name language="en-US">Disease history</name>
                <desc language="de-DE">Behandlungsverlauf</desc>
                <desc language="en-US">Disease history</desc>
                <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.51" effectiveDate="2024-05-24T15:34:44" statusCode="draft" type="item" lastModifiedDate="2023-12-08T14:55:47">
                    <name language="de-DE">Alter bei Krankheitsbeginn</name>
                    <name language="en-US">Age at onset</name>
                    <desc language="en-US">Age at which symptoms/signs first appeared</desc>
                    <desc language="de-DE">Alter bei Auftreten der ersten Symptome/Anzeichen</desc>
                    <valueDomain type="code">
                        <conceptList id="2.16.840.1.113883.3.1937.99.60.12.2.6.51.20240524153444.0">
                            <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.51.20240524153444.1">
                                <name language="de-DE">Pränatal</name>
                                <name language="en-US">Antenatal</name>
                            </concept>
                            <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.51.20240524153444.2">
                                <name language="de-DE">Bei Geburt</name>
                                <name language="en-US">At birth</name>
                            </concept>
                            <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.51.20240524153444.3">
                                <name language="de-DE">Unbestimmt</name>
                                <name language="en-US">Undetermined</name>
                            </concept>
                        </conceptList>
                    </valueDomain>
                </concept>
                <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.53" effectiveDate="2024-05-24T15:34:44" statusCode="draft" type="item" lastModifiedDate="2023-12-08T14:55:47">
                    <name language="de-DE">Datum Krankheitsbeginn</name>
                    <name language="en-US">Date onset</name>
                    <desc language="en-US">Date at which symptoms/signs first appeared</desc>
                    <desc language="de-DE">Datum des Auftreten der ersten Symptome/Anzeichen</desc>
                    <valueDomain type="date">
                        <example type="neutral">Date (dd/mm/yyyy)</example>
                    </valueDomain>
                </concept>
                <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.52" effectiveDate="2024-05-24T15:36:43" statusCode="draft" type="item" lastModifiedDate="2023-12-08T14:57:29">
                    <name language="en-US">Age at diagnosis</name>
                    <name language="de-DE">Alter bei Diagnose</name>
                    <desc language="en-US">Age at which diagnosis was made</desc>
                    <desc language="de-DE">Alter, in dem die Diagnose gestellt wurde</desc>
                    <valueDomain type="code">
                        <conceptList id="2.16.840.1.113883.3.1937.99.60.12.2.6.52.20240524153444.0">
                            <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.52.20240524153444.1">
                                <name language="de-DE">Pränatal</name>
                                <name language="en-US">Antenatal</name>
                            </concept>
                            <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.52.20240524153444.2">
                                <name language="de-DE">Bei Geburt</name>
                                <name language="en-US">At birth</name>
                            </concept>
                            <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.52.20240524153444.3">
                                <name language="de-DE">Unbestimmt</name>
                                <name language="en-US">Undetermined</name>
                            </concept>
                        </conceptList>
                    </valueDomain>
                </concept>
                <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.54" effectiveDate="2024-05-24T15:34:44" statusCode="draft" type="item" lastModifiedDate="2023-12-08T14:55:47">
                    <name language="de-DE">Datum der Diagnose</name>
                    <name language="en-US">Date of diagnosis</name>
                    <desc language="en-US">Date at which diagnosis was made</desc>
                    <desc language="de-DE">Datum an dem die Diagnose gestellt wurde</desc>
                    <valueDomain type="date">
                        <example type="neutral">Date (dd/mm/yyyy)</example>
                    </valueDomain>
                </concept>
            </concept>
            <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.6" effectiveDate="2024-05-24T15:37:53" statusCode="draft" type="group" lastModifiedDate="2024-05-25T09:06:23">
                <name language="de-DE">Diagnose</name>
                <name language="en-US">Diagnosis</name>
                <desc language="de-DE">Diagnose</desc>
                <desc language="en-US">Diagnosis</desc>
                <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.61" effectiveDate="2024-05-24T15:39:09" statusCode="draft" type="item" lastModifiedDate="2024-05-25T09:05:54">
                    <name language="de-DE">Diagnose der seltenen Krankheit</name>
                    <name language="en-US">Diagnosis of rare disease</name>
                    <desc language="de-DE">Diagnose des Fachzentrums</desc>
                    <desc language="en-US">Diagnosis retained by the specialised centre</desc>
                    <operationalization language="de-DE">Orpha-Code (dringend empfohlen – siehe http://www.orphadata.org/cgi-bin/inc/product1.inc.php) / Alpha-Code / ICD-9-Code / ICD-9-CM-Code / ICD-10-Code</operationalization>
                    <operationalization language="en-US">Orpha code (strongly recommended – see http://www.orphadata.org/cgi-bin/inc/product1.inc.php) / Alpha code/ ICD-9 code/ ICD-9-CM code / ICD-10 code</operationalization>
                    <valueDomain type="code">
                        <conceptList id="2.16.840.1.113883.3.1937.99.60.12.2.6.1659.20240524153909.0"/>
                    </valueDomain>
                </concept>
                <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.62" effectiveDate="2024-05-24T17:06:59" statusCode="draft" type="item" lastModifiedDate="2024-05-25T09:06:12">
                    <name language="de-DE">Genetische Diagnose</name>
                    <name language="en-US">Genetic diagnosis</name>
                    <desc language="de-DE">Genetische Diagnose des Fachzentrums</desc>
                    <desc language="en-US">Genetic diagnosis retained by the specialised centre</desc>
                    <operationalization language="de-DE">Internationale Klassifikation der Genmutationen (HGVS) (dringend empfohlen – siehe http://www.hgvs.org/) / HGNC-/OMIM-Code</operationalization>
                    <operationalization language="en-US">International classification of mutations (HGVS) (strongly recommended – see http://www.hgvs.org/) / HGNC / OMIM code</operationalization>
                    <valueDomain type="code">
                        <conceptList id="2.16.840.1.113883.3.1937.99.60.12.2.6.62.20240524170659.0"/>
                    </valueDomain>
                </concept>
                <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.63" effectiveDate="2024-05-24T17:08:01" statusCode="draft" type="item" lastModifiedDate="2024-05-25T09:06:23">
                    <name language="de-DE">Nicht diagnostizierter Fall</name>
                    <name language="en-US">Undiagnosed case</name>
                    <desc language="de-DE">Wie wird der nicht diagnostizierte Fall definiert?</desc>
                    <desc language="en-US">How the undiagnosed case is defined</desc>
                    <operationalization language="de-DE">
                        <ul>
                            <li>
                                <p>Phenotype (HPO)</p>
                            </li>
                            <li>
                                <p>Genotype (HGVS)</p>
                            </li>
                        </ul>
                    </operationalization>
                    <operationalization language="en-US">
                        <ul>
                            <li>
                                <p>Phenotype (HPO)</p>
                            </li>
                            <li>
                                <p>Genotype (HGVS)</p>
                            </li>
                        </ul>
                    </operationalization>
                    <valueDomain type="code">
                        <conceptList id="2.16.840.1.113883.3.1937.99.60.12.2.6.1661.20240524170801.0"/>
                    </valueDomain>
                </concept>
            </concept>
            <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.7" effectiveDate="2024-05-24T15:38:21" statusCode="draft" type="group" lastModifiedDate="2024-05-31T19:00:35">
                <name language="de-DE">Forschung</name>
                <name language="en-US">Research</name>
                <desc language="de-DE">Forschung</desc>
                <desc language="en-US">Research</desc>
                <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.71" effectiveDate="2024-05-24T17:10:49" statusCode="draft" type="item" lastModifiedDate="2024-05-25T09:05:14">
                    <name language="de-DE">Zustimmung zur Kontaktaufnahme zu Forschungszwecken</name>
                    <name language="en-US">Agreement to be contacted for research purposes</name>
                    <desc language="de-DE">Erlaubnis des Patienten, zu Forschungszwecken kontaktiert zu werden</desc>
                    <desc language="en-US">Patient's permission exists for being contacted for research purposes</desc>
                    <valueDomain type="boolean">
                        <example type="neutral">YES / NO</example>
                    </valueDomain>
                </concept>
                <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.72" effectiveDate="2024-05-24T17:11:51" statusCode="draft" type="item" lastModifiedDate="2024-05-25T09:04:24">
                    <name language="de-DE">Zustimmung zur Weiterverwendung von Daten</name>
                    <name language="en-US">Consent to the reuse of data</name>
                    <desc language="de-DE">Erlaubnis des Patienten zur Weiterverwendung seiner Daten für andere Forschungszwecke liegt vor</desc>
                    <desc language="en-US">Patient's consent exists for his/her data to be reused for other research purposes</desc>
                    <valueDomain type="boolean">
                        <example type="neutral">YES / NO</example>
                    </valueDomain>
                </concept>
                <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.73" effectiveDate="2024-05-24T17:13:00" statusCode="draft" type="item" lastModifiedDate="2024-05-24T17:14:08">
                    <name language="de-DE">Biologische Probe</name>
                    <name language="en-US">Biological sample</name>
                    <desc language="de-DE">Biologische Probe des Patienten ist für die Forschung verfügbar</desc>
                    <desc language="en-US">Patient's biological sample available for research</desc>
                    <operationalization language="de-DE">Falls JA, Frage 'Link zu einer Biobank?' beantworten.</operationalization>
                    <operationalization language="en-US">If YES answer question 'Link to a biobank?'</operationalization>
                    <valueDomain type="boolean">
                        <example type="neutral">YES / NO</example>
                    </valueDomain>
                </concept>
                <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.74" effectiveDate="2024-05-24T17:14:11" statusCode="draft" type="item" lastModifiedDate="2024-05-24T17:16:39">
                    <name language="de-DE">Link zu einer Biobank?</name>
                    <name language="en-US">Link to a biobank?</name>
                    <desc language="de-DE">Biologische Probe wird in einer Biobank aufbewahrt?</desc>
                    <desc language="en-US">Biological sample stored in a biobank?</desc>
                    <operationalization language="de-DE">Falls Link vorhanden, 'Link zur Biobank' ausfüllen</operationalization>
                    <operationalization language="en-US">If link available, populate 'Link to biobank'</operationalization>
                    <valueDomain type="boolean">
                        <example type="neutral">YES / NO</example>
                    </valueDomain>
                </concept>
                <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.75" effectiveDate="2024-05-24T17:14:11" statusCode="draft" type="item" lastModifiedDate="2024-05-31T19:00:35">
                    <name language="en-US" lastTranslated="2024-05-31T19:00:23">Biobank (link)</name>
                    <name language="de-DE" lastTranslated="2024-05-31T19:00:23">Biobank (Link)</name>
                    <desc language="en-US" lastTranslated="2024-05-31T19:00:23">Biological sample stored in a biobank</desc>
                    <desc language="de-DE" lastTranslated="2024-05-31T19:00:23">Biologische Probe wird in einer Biobank aufbewahrt</desc>
                    <operationalization language="en-US" lastTranslated="2024-05-31T19:00:23">if appropriate use https://directory.bbmri-eric.eu/</operationalization>
                    <operationalization language="de-DE" lastTranslated="2024-05-31T19:00:23">gegebenenfalls Link nutzen: https://directory.bbmri-eric.eu/</operationalization>
                    <valueDomain type="string">
                        <example type="neutral">bbmri-eric:ID:CY_ALLBIO</example>
                    </valueDomain>
                </concept>
            </concept>
            <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.8" effectiveDate="2024-05-24T15:38:35" statusCode="draft" type="group" lastModifiedDate="2024-05-25T09:05:26">
                <name language="de-DE">Behinderung</name>
                <name language="en-US">Disability</name>
                <desc language="de-DE"/>
                <concept id="2.16.840.1.113883.3.1937.99.60.12.2.6.81" effectiveDate="2024-05-24T17:19:30" statusCode="draft" type="item" lastModifiedDate="2024-05-25T09:04:24">
                    <name language="de-DE">Einstufung der Funktionsfähigkeit/ Behinderung</name>
                    <name language="en-US">Classification of functioning/disability</name>
                    <desc language="de-DE">Behinderungsprofil des Patienten gemäß der Internationalen Klassifizierung der Funktionsfähigkeit, Behinderung und Gesundheit (ICF)</desc>
                    <desc language="en-US">Patient's disability profile according to International Classification of Functioning and Disability (ICF)</desc>
                    <operationalization language="de-DE">siehe http://www.who.int/classifications/icf/whodasii/en/</operationalization>
                    <operationalization language="en-US">see http://www.who.int/classifications/icf/whodasii/en/</operationalization>
                    <valueDomain type="code">
                        <conceptList id="2.16.840.1.113883.3.1937.99.60.12.2.6.81.20240524171930.0"/>
                    </valueDomain>
                </concept>
            </concept>
        </dataset>
    </datasets>
    <scenarios>
        <actors>
            <actor id="2.16.840.1.113883.3.1937.99.60.12.7.1" type="person">
                <name language="de-DE">Behandelnde Person</name>
                <name language="en-US">Care Giver</name>
                <desc language="de-DE">Behandelnde Person, die Daten eines Patienten mit einer seltenen Erkrankungen eingibt</desc>
                <desc language="en-US">Care Giver entering data of a patienrt with a rare disease</desc>
            </actor>
            <actor id="2.16.840.1.113883.3.1937.99.60.12.7.2" type="organization">
                <name language="en-US" lastTranslated="2024-05-31T18:52:42">Registry</name>
                <name language="de-DE" lastTranslated="2024-05-31T18:52:42">Register</name>
                <desc language="en-US" lastTranslated="2024-05-31T18:52:42">Registry for Rare Diseases</desc>
                <desc language="de-DE" lastTranslated="2024-05-31T18:52:42">Register für Seltene Erkrankungen</desc>
            </actor>
        </actors>
        <scenario id="2.16.840.1.113883.3.1937.99.60.12.3.1" effectiveDate="2024-05-31T00:00:00" statusCode="draft" lastModifiedDate="2024-05-31T18:59:35">
            <name language="en-US">Rare Disease Registration</name>
            <desc language="en-US" lastTranslated="2024-05-31T18:52:25"><p>Rare Disease Registration </p></desc>
            <transaction id="2.16.840.1.113883.3.1937.99.60.12.4.1" effectiveDate="2024-05-31T00:00:00" statusCode="draft" type="group" lastModifiedDate="2024-05-31T18:59:35">
                <name language="en-US" lastTranslated="2024-05-31T18:52:25">Rare Disease Registration</name>
                <transaction id="2.16.840.1.113883.3.1937.99.60.12.4.2" effectiveDate="2024-05-31T00:00:00" statusCode="draft" type="initial" lastModifiedDate="2024-05-31T18:59:35">
                    <name language="en-US" lastTranslated="2024-05-31T18:52:25">Rare Disease Registration</name>
                    <name language="de-DE" lastTranslated="2024-05-31T20:57:29">Registrierung Seltener Erkrankungen</name>
                    <actors>
                        <actor id="2.16.840.1.113883.3.1937.99.60.12.7.1" role="sender"/>
                        <actor id="2.16.840.1.113883.3.1937.99.60.12.7.2" role="receiver"/>
                    </actors>
                    <representingTemplate sourceDataset="2.16.840.1.113883.3.1937.99.60.12.1.6" sourceDatasetFlexibility="2024-05-17T00:00:00">
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.1" flexibility="2024-05-24T15:18:18" minimumMultiplicity="1" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--group 1 :: Pseudonym--></concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.11" flexibility="2024-05-17T17:34:59" minimumMultiplicity="1" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--item 11 :: Pseudonym--></concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.2" flexibility="2024-05-24T15:20:25" minimumMultiplicity="1" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--group 2 :: Persönliche Angaben--></concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.21" flexibility="2024-05-24T15:21:04" minimumMultiplicity="0" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--item 21 :: Geburtsdatum--></concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.22" flexibility="2024-05-24T15:21:51" minimumMultiplicity="0" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--item 22 :: Sex--></concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.3" flexibility="2024-05-24T15:26:31" minimumMultiplicity="1" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--group 3 :: Patientenstatus--></concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.31" flexibility="2024-05-24T15:20:20" minimumMultiplicity="1" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--item 31 :: Patientenstatus--></concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.32" flexibility="2024-05-24T15:29:58" conformance="C" isMandatory="false">
                            <!--item 32 :: Todeszeitpunkt-->
                            <enableWhen question="2.16.840.1.113883.3.1937.99.60.12.2.6.31" operator="=">
                                <answerBoolean value="true"/>
                            </enableWhen>
                        </concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.4" flexibility="2024-05-24T15:31:31" minimumMultiplicity="1" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--group 4 :: Behandlungsverlauf--></concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.41" flexibility="2024-05-24T15:31:59" minimumMultiplicity="0" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--item 41 :: Erstkontakt mit dem Fachzentrum--></concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.5" flexibility="2024-05-24T15:31:31" minimumMultiplicity="1" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--group 5 :: Behandlungsverlauf--></concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.51" flexibility="2024-05-24T15:34:44" minimumMultiplicity="0" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--item 51 :: Alter bei Krankheitsbeginn--></concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.53" flexibility="2024-05-24T15:34:44" minimumMultiplicity="0" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--item 53 :: Datum Krankheitsbeginn--></concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.52" flexibility="2024-05-24T15:36:43" minimumMultiplicity="0" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--item 52 :: Age at diagnosis--></concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.54" flexibility="2024-05-24T15:34:44" minimumMultiplicity="0" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--item 54 :: Datum der Diagnose--></concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.6" flexibility="2024-05-24T15:37:53" minimumMultiplicity="1" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--group 6 :: Diagnose--></concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.61" flexibility="2024-05-24T15:39:09" minimumMultiplicity="0" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--item 61 :: Diagnose der seltenen Krankheit--></concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.62" flexibility="2024-05-24T17:06:59" minimumMultiplicity="0" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--item 62 :: Genetische Diagnose--></concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.63" flexibility="2024-05-24T17:08:01" minimumMultiplicity="0" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--item 63 :: Nicht diagnostizierter Fall--></concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.7" flexibility="2024-05-24T15:38:21" minimumMultiplicity="1" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--group 7 :: Forschung--></concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.71" flexibility="2024-05-24T17:10:49" minimumMultiplicity="0" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--item 71 :: Zustimmung zur Kontaktaufnahme zu Forschungszwecken--></concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.72" flexibility="2024-05-24T17:11:51" minimumMultiplicity="0" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--item 72 :: Zustimmung zur Weiterverwendung von Daten--></concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.73" flexibility="2024-05-24T17:13:00" minimumMultiplicity="0" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--item 73 :: Biologische Probe--></concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.74" flexibility="2024-05-24T17:14:11" conformance="C" isMandatory="false">
                            <!--item 74 :: Link zu einer Biobank?-->
                            <enableWhen question="2.16.840.1.113883.3.1937.99.60.12.2.6.73" operator="=">
                                <answerBoolean value="true"/>
                            </enableWhen>
                        </concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.75" flexibility="2024-05-24T17:14:11" conformance="C" isMandatory="false">
                            <!--item 75 :: Biobank (link)-->
                            <enableWhen question="2.16.840.1.113883.3.1937.99.60.12.2.6.74" operator="=">
                                <answerBoolean value="true"/>
                            </enableWhen>
                        </concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.8" flexibility="2024-05-24T15:38:35" minimumMultiplicity="1" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--group 8 :: Behinderung--></concept>
                        <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.81" flexibility="2024-05-24T17:19:30" minimumMultiplicity="0" maximumMultiplicity="1" conformance="R" isMandatory="false"><!--item 81 :: Einstufung der Funktionsfähigkeit/ Behinderung--></concept>
                    </representingTemplate>
                </transaction>
            </transaction>
        </scenario>
    </scenarios>
    <ids>
        <baseId id="2.16.840.1.113883.3.1937.99.60.12.1" type="DS" prefix="demo12-"/>
        <baseId id="2.16.840.1.113883.3.1937.99.60.12.2" type="DE" prefix="demo12-dataelement-"/>
        <baseId id="2.16.840.1.113883.3.1937.99.60.12.3" type="SC" prefix="demo12-scenario-"/>
        <baseId id="2.16.840.1.113883.3.1937.99.60.12.4" type="TR" prefix="demo12-transactions-"/>
        <baseId id="2.16.840.1.113883.3.1937.99.60.12.5" type="CS" prefix="demo12-codesystem-"/>
        <baseId id="2.16.840.1.113883.3.1937.99.60.12.6" type="IS" prefix="demo12-issue-"/>
        <baseId id="2.16.840.1.113883.3.1937.99.60.12.7" type="AC" prefix="demo12-actors-"/>
        <baseId id="2.16.840.1.113883.3.1937.99.60.12.8" type="CL" prefix="demo12-conceptlist-"/>
        <baseId id="2.16.840.1.113883.3.1937.99.60.12.9" type="EL" prefix="demo12-element-"/>
        <baseId id="2.16.840.1.113883.3.1937.99.60.12.10" type="TM" prefix="demo12-template-"/>
        <baseId id="2.16.840.1.113883.3.1937.99.60.12.11" type="VS" prefix="demo12-valueset-"/>
        <baseId id="2.16.840.1.113883.3.1937.99.60.12.12" type="RL" prefix="demo12-regel-"/>
        <baseId id="2.16.840.1.113883.3.1937.99.60.12.17" type="SX" prefix="demo12-example-scenario-"/>
        <baseId id="2.16.840.1.113883.3.1937.99.60.12.18" type="TX" prefix="demo12-example-transaction-"/>
        <baseId id="2.16.840.1.113883.3.1937.99.60.12.19" type="EX" prefix="demo12-example-instance-"/>
        <baseId id="2.16.840.1.113883.3.1937.99.60.12.20" type="QX" prefix="demo12-qualification-test-instances-"/>
        <baseId id="2.16.840.1.113883.3.1937.99.60.12.22" type="CM" prefix="demo12-mycommunity-"/>
        <baseId id="2.16.840.1.113883.3.1937.99.60.12.24" type="MP" prefix="demo12-mapping-"/>
        <baseId id="2.16.840.1.113883.3.1937.99.60.12.26" type="SD" prefix="demo12-structuredefinition-"/>
        <baseId id="2.16.840.1.113883.3.1937.99.60.12.27" type="QQ" prefix="demo12-questionnaire-"/>
        <baseId id="2.16.840.1.113883.3.1937.99.60.12.28" type="QR" prefix="demo12-questionnaire-response-"/>
        <baseId id="2.16.840.1.113883.3.1937.99.60.12.29" type="IG" prefix="demo12-implementationguide-"/>
        <defaultBaseId id="2.16.840.1.113883.3.1937.99.60.12.1" type="DS"/>
        <defaultBaseId id="2.16.840.1.113883.3.1937.99.60.12.2" type="DE"/>
        <defaultBaseId id="2.16.840.1.113883.3.1937.99.60.12.3" type="SC"/>
        <defaultBaseId id="2.16.840.1.113883.3.1937.99.60.12.4" type="TR"/>
        <defaultBaseId id="2.16.840.1.113883.3.1937.99.60.12.5" type="CS"/>
        <defaultBaseId id="2.16.840.1.113883.3.1937.99.60.12.6" type="IS"/>
        <defaultBaseId id="2.16.840.1.113883.3.1937.99.60.12.7" type="AC"/>
        <defaultBaseId id="2.16.840.1.113883.3.1937.99.60.12.8" type="CL"/>
        <defaultBaseId id="2.16.840.1.113883.3.1937.99.60.12.9" type="EL"/>
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        <defaultBaseId id="2.16.840.1.113883.3.1937.99.60.12.17" type="SX"/>
        <defaultBaseId id="2.16.840.1.113883.3.1937.99.60.12.18" type="TX"/>
        <defaultBaseId id="2.16.840.1.113883.3.1937.99.60.12.19" type="EX"/>
        <defaultBaseId id="2.16.840.1.113883.3.1937.99.60.12.20" type="QX"/>
        <defaultBaseId id="2.16.840.1.113883.3.1937.99.60.12.22" type="CM"/>
        <defaultBaseId id="2.16.840.1.113883.3.1937.99.60.12.24" type="MP"/>
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        <defaultBaseId id="2.16.840.1.113883.3.1937.99.60.12.29" type="IG"/>
    </ids>
    <terminology>
        <codeSystem ref="2.16.840.1.113883.6.1" name="LOINC" displayName="LOINC"/>
        <codeSystem ref="2.16.840.1.113883.6.96" name="SNOMED-CT" displayName="SNOMED-CT"/>
    </terminology>
    <rules>
        <!-- Rare Disease Registration -->
        <questionnaireAssociation questionnaireId="2.16.840.1.113883.3.1937.99.60.12.27.1" questionnaireEffectiveDate="2024-05-31T21:47:49">
            <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.1" effectiveDate="2024-05-24T15:18:18" elementId="2.16.840.1.113883.3.1937.99.60.12.2.6.1"/>
            <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.11" effectiveDate="2024-05-17T17:34:59" elementId="2.16.840.1.113883.3.1937.99.60.12.2.6.11"/>
            <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.2" effectiveDate="2024-05-24T15:20:25" elementId="2.16.840.1.113883.3.1937.99.60.12.2.6.2"/>
            <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.21" effectiveDate="2024-05-24T15:21:04" elementId="2.16.840.1.113883.3.1937.99.60.12.2.6.21"/>
            <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.22" effectiveDate="2024-05-24T15:21:51" elementId="2.16.840.1.113883.3.1937.99.60.12.2.6.22"/>
            <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.3" effectiveDate="2024-05-24T15:26:31" elementId="2.16.840.1.113883.3.1937.99.60.12.2.6.3"/>
            <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.31" effectiveDate="2024-05-24T15:20:20" elementId="2.16.840.1.113883.3.1937.99.60.12.2.6.31"/>
            <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.32" effectiveDate="2024-05-24T15:29:58" elementId="2.16.840.1.113883.3.1937.99.60.12.2.6.32"/>
            <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.4" effectiveDate="2024-05-24T15:31:31" elementId="2.16.840.1.113883.3.1937.99.60.12.2.6.4"/>
            <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.41" effectiveDate="2024-05-24T15:31:59" elementId="2.16.840.1.113883.3.1937.99.60.12.2.6.41"/>
            <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.5" effectiveDate="2024-05-24T15:31:31" elementId="2.16.840.1.113883.3.1937.99.60.12.2.6.5"/>
            <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.51" effectiveDate="2024-05-24T15:34:44" elementId="2.16.840.1.113883.3.1937.99.60.12.2.6.51"/>
            <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.53" effectiveDate="2024-05-24T15:34:44" elementId="2.16.840.1.113883.3.1937.99.60.12.2.6.53"/>
            <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.52" effectiveDate="2024-05-24T15:36:43" elementId="2.16.840.1.113883.3.1937.99.60.12.2.6.52"/>
            <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.54" effectiveDate="2024-05-24T15:34:44" elementId="2.16.840.1.113883.3.1937.99.60.12.2.6.54"/>
            <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.6" effectiveDate="2024-05-24T15:37:53" elementId="2.16.840.1.113883.3.1937.99.60.12.2.6.6"/>
            <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.61" effectiveDate="2024-05-24T15:39:09" elementId="2.16.840.1.113883.3.1937.99.60.12.2.6.61"/>
            <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.62" effectiveDate="2024-05-24T17:06:59" elementId="2.16.840.1.113883.3.1937.99.60.12.2.6.62"/>
            <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.63" effectiveDate="2024-05-24T17:08:01" elementId="2.16.840.1.113883.3.1937.99.60.12.2.6.63"/>
            <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.7" effectiveDate="2024-05-24T15:38:21" elementId="2.16.840.1.113883.3.1937.99.60.12.2.6.7"/>
            <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.71" effectiveDate="2024-05-24T17:10:49" elementId="2.16.840.1.113883.3.1937.99.60.12.2.6.71"/>
            <concept ref="2.16.840.1.113883.3.1937.99.60.12.2.6.72" effectiveDate="2024-05-24T17:11:51" elementId="2.16.840.1.113883.3.1937.99.60.12.2.6.72"/>
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                        <valueString language="de-DE" value="Weiblich"/>
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                    <answerOption>
                        <valueString language="de-DE" value="Unbestimmt"/>
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                    <answerOption>
                        <valueString language="de-DE" value="Fötus (unbekannt)"/>
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                        <valueString language="en-US" value="Alive"/>
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                    <answerOption>
                        <valueString language="en-US" value="Dead"/>
                        <valueString language="de-DE" value="Tot"/>
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                    <answerOption>
                        <valueString language="en-US" value="Lost in follow-up"/>
                        <valueString language="de-DE" value="Nicht weiterverfolgt"/>
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                    <answerOption>
                        <valueString language="en-US" value="Opted-out"/>
                        <valueString language="de-DE" value="Verweigert"/>
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                    <text language="de-DE">Todeszeitpunkt</text>
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                <text language="de-DE">Behandlungsverlauf</text>
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                    <text language="de-DE">Erstkontakt mit dem Fachzentrum</text>
                    <text language="en-US">First contact with specialised centre</text>
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                    <text language="en-US">Age at onset</text>
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                        <valueString language="de-DE" value="Pränatal"/>
                        <valueString language="en-US" value="Antenatal"/>
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                    <answerOption>
                        <valueString language="de-DE" value="Bei Geburt"/>
                        <valueString language="en-US" value="At birth"/>
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                    <answerOption>
                        <valueString language="de-DE" value="Unbestimmt"/>
                        <valueString language="en-US" value="Undetermined"/>
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                    <text language="de-DE">Datum Krankheitsbeginn</text>
                    <text language="en-US">Date onset</text>
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                    <text language="en-US">Age at diagnosis</text>
                    <text language="de-DE">Alter bei Diagnose</text>
                    <answerOption>
                        <valueString language="de-DE" value="Pränatal"/>
                        <valueString language="en-US" value="Antenatal"/>
                    </answerOption>
                    <answerOption>
                        <valueString language="de-DE" value="Bei Geburt"/>
                        <valueString language="en-US" value="At birth"/>
                    </answerOption>
                    <answerOption>
                        <valueString language="de-DE" value="Unbestimmt"/>
                        <valueString language="en-US" value="Undetermined"/>
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                    <text language="de-DE">Datum der Diagnose</text>
                    <text language="en-US">Date of diagnosis</text>
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                <text language="de-DE">Diagnose</text>
                <text language="en-US">Diagnosis</text>
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                    <text language="de-DE">Diagnose der seltenen Krankheit</text>
                    <text language="en-US">Diagnosis of rare disease</text>
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                    <text language="de-DE">Nicht diagnostizierter Fall</text>
                    <text language="en-US">Undiagnosed case</text>
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                    <text language="de-DE">Zustimmung zur Kontaktaufnahme zu Forschungszwecken</text>
                    <text language="en-US">Agreement to be contacted for research purposes</text>
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                    <text language="de-DE">Zustimmung zur Weiterverwendung von Daten</text>
                    <text language="en-US">Consent to the reuse of data</text>
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                    <text language="de-DE">Biologische Probe</text>
                    <text language="en-US">Biological sample</text>
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                    <text language="de-DE">Link zu einer Biobank?</text>
                    <text language="en-US">Link to a biobank?</text>
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                    <text language="en-US" lastTranslated="2024-05-31T19:00:23">Biobank (link)</text>
                    <text language="de-DE" lastTranslated="2024-05-31T19:00:23">Biobank (Link)</text>
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                        <answerBoolean value="true"/>
                    </enableWhen>
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                <text language="de-DE">Behinderung</text>
                <text language="en-US">Disability</text>
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                    <text language="de-DE">Einstufung der Funktionsfähigkeit/ Behinderung</text>
                    <text language="en-US">Classification of functioning/disability</text>
                </item>
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