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Scoping review of the recommendations and guidance for improving the quality of rare disease registries.

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Title: Scoping review of the recommendations and guidance for improving the quality of rare disease registries.
Authors: Tarride, JE1,2,3 (AUTHOR), Okoh, A.1 (AUTHOR), Aryal, K.1 (AUTHOR), Prada, C.1 (AUTHOR), Milinkovic, Deborah2 (AUTHOR) milinkda@mcmaster.ca, Keepanasseril, A.1 (AUTHOR), Iorio, A.1 (AUTHOR)
Source: Orphanet Journal of Rare Diseases. 5/6/2024, Vol. 19 Issue 1, p1-13. 13p.
Database: Academic Search Ultimate
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Header DbId: asn
DbLabel: Academic Search Ultimate
An: 177062863
AccessLevel: 2
PubType: Academic Journal
PubTypeId: academicJournal
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  Data: Scoping review of the recommendations and guidance for improving the quality of rare disease registries.
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  Data: <searchLink fieldCode="JN" term="%22Orphanet+Journal+of+Rare+Diseases%22">Orphanet Journal of Rare Diseases</searchLink>. 5/6/2024, Vol. 19 Issue 1, p1-13. 13p.
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=asn&AN=177062863
RecordInfo BibRecord:
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      – Type: doi
        Value: 10.1186/s13023-024-03193-y
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      – Code: eng
        Text: English
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        PageCount: 13
        StartPage: 1
    Titles:
      – TitleFull: Scoping review of the recommendations and guidance for improving the quality of rare disease registries.
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            NameFull: Tarride, JE
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            NameFull: Okoh, A.
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            NameFull: Aryal, K.
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            NameFull: Prada, C.
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            NameFull: Milinkovic, Deborah
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            NameFull: Keepanasseril, A.
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            – D: 06
              M: 05
              Text: 5/6/2024
              Type: published
              Y: 2024
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            – TitleFull: Orphanet Journal of Rare Diseases
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