<?xml version="1.0" encoding="UTF-8"?>
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<docDscr>
  <citation>
    <titlStmt>
      <titl>Registry on Amyotrophic Lateral Sclerosis (ALS) in Limousin</titl>
      <IDNo>FRESH-PEF73035-en</IDNo>
    </titlStmt>
    <prodStmt>
      <producer abbr="" affiliation="UNIVERSITE DE LIMOGES" role="">Benoît MARIN</producer>
    </prodStmt>
    <verStmt>
      <version></version>
    </verStmt>
  </citation>
</docDscr>
<stdyDscr>
  <citation>
    <titlStmt>
      <titl>
                Registry on Amyotrophic Lateral Sclerosis (ALS) in Limousin            </titl>
      <altTitl>
                    FRALim                </altTitl>
      <IDNo agency="FReSH-lang">
                FRESH-PEF73035-en            </IDNo>
      <IDNo agency="PEF">
                    73035                </IDNo>
      <IDNo agency="FReSH">
                    FRESH-PEF73035                </IDNo>
    </titlStmt>
    <rspStmt>
      <AuthEnty>
                    Philippe COURATIER                                                                                                                            </AuthEnty>
      <AuthEnty affiliation="UNIVERSITE DE LIMOGES">
        <ExtLink title="ROR" URI="https://ror.org/02cp04407" role="organisation id"/>
        <ExtLink title="SIREN" URI="198706699" role="organisation id"/>
      </AuthEnty>
      <AuthEnty>
                    Benoît MARIN                                                                                                                            </AuthEnty>
      <AuthEnty affiliation="UNIVERSITE DE LIMOGES">
        <ExtLink title="ROR" URI="https://ror.org/02cp04407" role="organisation id"/>
        <ExtLink title="SIREN" URI="198706699" role="organisation id"/>
      </AuthEnty>
      <AuthEnty>
                    Pierre-Marie PREUX                                                                                                                            </AuthEnty>
      <AuthEnty affiliation="UNIVERSITE DE LIMOGES">
        <ExtLink title="ROR" URI="https://ror.org/02cp04407" role="organisation id"/>
        <ExtLink title="SIREN" URI="198706699" role="organisation id"/>
      </AuthEnty>
      <othId affiliation="EURALS (European ALS Consortium)" type="collaboration">
                                    </othId>
    </rspStmt>
    <prodStmt>
      <producer role="sponsor">
                                            INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM)                    
                                    </producer>
      <prodPlac>
                Epidemiology France Portal (PEF)            </prodPlac>
      <fundAg>
                                            AGENCE NATIONALE DE LA RECHERCHE (ANR)                    
                                    </fundAg>
      <fundAg>
                                            REGION NOUVELLE AQUITAINE                    
                                    </fundAg>
    </prodStmt>
    <distStmt>
      <distrbtr abbr="null">
                    null</distrbtr>
      <contact affiliation="UNIVERSITE DE LIMOGES" email="philippe.couratier@unilim.fr">
                    Philippe;COURATIER
                                            <ExtLink title="ROR" URI="https://ror.org/02cp04407" role="organisation id"/>
                                            <ExtLink title="SIREN" URI="198706699" role="organisation id"/>
                                    </contact>
      <contact affiliation="UNIVERSITE DE LIMOGES" email="benoit.marin@aphp.fr">
                    Benoît;MARIN
                                            <ExtLink title="ROR" URI="https://ror.org/02cp04407" role="organisation id"/>
                                            <ExtLink title="SIREN" URI="198706699" role="organisation id"/>
                                    </contact>
      <contact affiliation="UNIVERSITE DE LIMOGES" email="preux@unilim.fr">
                    Pierre-Marie;PREUX
                                            <ExtLink title="ROR" URI="https://ror.org/02cp04407" role="organisation id"/>
                                            <ExtLink title="SIREN" URI="198706699" role="organisation id"/>
                                    </contact>
      <depDate date="2026-06-16"/>
      <distDate date="2026-06-16"/>
    </distStmt>
    <biblCit format="">
            </biblCit>
    <holdings URI="null"/>
    <notes> </notes>
  </citation>
  <stdyInfo>
    <studyBudget/>
    <subject>
      <keyword vocab="" vocabURI="">
                    amyotrophic lateral sclerosis</keyword>
      <keyword vocab="" vocabURI="">
                    ALS</keyword>
      <keyword vocab="" vocabURI="">
                    Limousin</keyword>
      <keyword vocab="" vocabURI="">
                    treatment</keyword>
      <keyword vocab="" vocabURI="">
                    registry</keyword>
      <topcClas vocab="health theme">
                        Neurology                                                        <ExtLink title="ESV" URI="http://data.europa.eu/8mn/euroscivoc/c4793dfe-e80e-49dd-9fcc-a1a742de1b25"/>
                                                            <ExtLink title="ESV" URI="http://data.europa.eu/8mn/euroscivoc/00a5c4f4-b7ee-41a4-bcdf-3a02e6be1660"/>
                                                            <ExtLink title="MeSH" URI="http://id.nlm.nih.gov/mesh/D009462"/>
                                                </topcClas>
      <topcClas vocab="cim-11">
                        Amyotrophic lateral sclerosis                                            </topcClas>
      <topcClas vocab="health determinant">
                        Biological determinants: Genetic predisposition                    </topcClas>
      <topcClas vocab="health determinant">
                        Biological determinants                    </topcClas>
    </subject>
    <abstract contentType="purpose">To improve the epidemiological and clinical description of ALS in France.</abstract>
    <abstract contentType="abstract">null</abstract>
    <sumDscr>
      <collDate event="start" date="2000-01-01"/>
      <nation abbr="fr">
                    France
                                            <concept vocab="ISO" vocabURI="fr"/>
                                    </nation>
      <geogCover>Nouvelle-Aquitaine</geogCover>
      <geogUnit/>
      <anlyUnit>
                Individuals            </anlyUnit>
      <universe level="type" clusion="I">Patients population                    </universe>
      <universe level="sex" clusion="I">Male                                                            <concept vocab="MeSH" vocabURI="http://id.nlm.nih.gov/mesh/D008297"/>
                                                    </universe>
      <universe level="sex" clusion="I">Female                                                            <concept vocab="MeSH" vocabURI="http://id.nlm.nih.gov/mesh/D005260"/>
                                                    </universe>
      <universe level="age" clusion="I">Young Adult (19 to 24 years)                                                            <concept vocab="MeSH" vocabURI="http://id.nlm.nih.gov/mesh/D055815"/>
                                                    </universe>
      <universe level="age" clusion="I">Adult (25 to 44 years)                                                            <concept vocab="MeSH" vocabURI="http://id.nlm.nih.gov/mesh/D000328"/>
                                                    </universe>
      <universe level="age" clusion="I">Middle Aged (45 to 64 years)                                                            <concept vocab="MeSH" vocabURI="http://id.nlm.nih.gov/mesh/D008875"/>
                                                    </universe>
      <universe level="age" clusion="I">Aged (65 to 79 years)                                                            <concept vocab="MeSH" vocabURI="http://id.nlm.nih.gov/mesh/D000368"/>
                                                    </universe>
      <universe level="age" clusion="I">Aged, 80 and over (80 years and more)                                                            <concept vocab="MeSH" vocabURI="http://id.nlm.nih.gov/mesh/D000369"/>
                                                    </universe>
      <universe clusion="I">Patients with ALS identified by one of the following 3 sources: The French national body coordinating ALS referral centres; public and private hospitals in the Limousin region; health insurance data.                    </universe>
      <dataKind>Clinical data</dataKind>
      <dataKind>Socio-demographic data</dataKind>
    </sumDscr>
    <qualityStatement>
      <otherQualityStatement>The collaborating centre for methodology is CEBIMER (Centre of epidemiology</otherQualityStatement>
      <otherQualityStatement>biostatistics and research methodology)</otherQualityStatement>
      <otherQualityStatement>Limoges University Hospital</otherQualityStatement>
      <otherQualityStatement>led by Prof. Preux; Dr. Marin</otherQualityStatement>
      <otherQualityStatement>deputy head of the Capture-R System Management software.</otherQualityStatement>
    </qualityStatement>
  </stdyInfo>
  <studyDevelopment>
    <developmentActivity type="primary evaluation">
      <description>Health event/morbidity
Health event/mortality
Health care consumption and services</description>
    </developmentActivity>
  </studyDevelopment>
  <method>
    <dataColl>
      <sampProc>Other                                                            <concept vocab="CESSDA" vocabURI="Other"/>
                                                    </sampProc>
      <targetSampleSize>
        <sampleSizeFormula>&lt; 500 individuals                        </sampleSizeFormula>
      </targetSampleSize>
      <collMode>Converting or copying information into a structured record                                                            <concept vocab="CESSDA" vocabURI="Transcription"/>
                                                    </collMode>
    </dataColl>
    <notes>Observational Study</notes>
    <notes subject="research type">
                        Observational Study                    </notes>
    <notes subject="observational study method">
                        Morbidity registry                    </notes>
    <anlyInfo>
      <respRate>322</respRate>
    </anlyInfo>
    <stdyClas>Unknown</stdyClas>
  </method>
  <dataAccs>
    <setAvail>
      <avlStatus>
                            Restricted access                                                    </avlStatus>
    </setAvail>
    <useStmt>
      <conditions>Available under certain conditions (contact 1 of 3 scientists in charge).</conditions>
    </useStmt>
  </dataAccs>
  <othrStdyMat>
    <relMat>Access on specific project only</relMat>
  </othrStdyMat>
</stdyDscr>
<dataDscr>
</dataDscr></codeBook>
