Best practices in demographic data collection for equity, diversity, and inclusion in rare disease research: A systematic review.
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| Title: | Best practices in demographic data collection for equity, diversity, and inclusion in rare disease research: A systematic review. |
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| Authors: | Sinan I; Department of Medical Genetics, University of Calgary, Calgary, Alberta, Canada. Electronic address: 19is14@queensu.ca., Johnston M; Department of Medical Genetics, University of Calgary, Calgary, Alberta, Canada., Marwaha A; Department of Medical Genetics, University of Calgary, Calgary, Alberta, Canada. |
| Source: | Genetics in medicine : official journal of the American College of Medical Genetics [Genet Med] 2026 Jul; Vol. 28 (7), pp. 102592. Date of Electronic Publication: 2026 May 01. |
| Publication Type: | Journal Article; Systematic Review |
| Journal Info: | Publisher: Elsevier Country of Publication: United States NLM ID: 9815831 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1530-0366 (Electronic) Linking ISSN: 10983600 NLM ISO Abbreviation: Genet Med Subsets: MEDLINE |
| Database: | MEDLINE Ultimate |
| FullText | Text: Availability: 0 |
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| Header | DbId: mdl DbLabel: MEDLINE Ultimate An: 42070090 AccessLevel: 2 PubType: Academic Journal PubTypeId: academicJournal PreciseRelevancyScore: 0 |
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| Items | – Name: Title Label: Title Group: Ti Data: Best practices in demographic data collection for equity, diversity, and inclusion in rare disease research: A systematic review. – Name: Author Label: Authors Group: Au Data: <searchLink fieldCode="AU" term="%22Sinan+I%22">Sinan I</searchLink>; Department of Medical Genetics, University of Calgary, Calgary, Alberta, Canada. Electronic address: 19is14@queensu.ca.<br /><searchLink fieldCode="AU" term="%22Johnston+M%22">Johnston M</searchLink>; Department of Medical Genetics, University of Calgary, Calgary, Alberta, Canada.<br /><searchLink fieldCode="AU" term="%22Marwaha+A%22">Marwaha A</searchLink>; Department of Medical Genetics, University of Calgary, Calgary, Alberta, Canada. – Name: TitleSource Label: Source Group: Src Data: <searchLink fieldCode="JN" term="%229815831%22">Genetics in medicine : official journal of the American College of Medical Genetics</searchLink> [Genet Med] 2026 Jul; Vol. 28 (7), pp. 102592. <i>Date of Electronic Publication: </i>2026 May 01. – Name: TypePub Label: Publication Type Group: TypPub Data: Journal Article; Systematic Review – Name: TitleSource Label: Journal Info Group: Src Data: <i>Publisher: </i><searchLink fieldCode="PB" term="%22Elsevier%22">Elsevier </searchLink><i>Country of Publication: </i>United States <i>NLM ID: </i>9815831 <i>Publication Model: </i>Print-Electronic <i>Cited Medium: </i>Internet <i>ISSN: </i>1530-0366 (Electronic) <i>Linking ISSN: </i><searchLink fieldCode="IS" term="%2210983600%22">10983600 </searchLink><i>NLM ISO Abbreviation: </i>Genet Med <i>Subsets: </i>MEDLINE |
| PLink | https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=mdl&AN=42070090 |
| RecordInfo | BibRecord: BibEntity: Identifiers: – Type: doi Value: 10.1016/j.gim.2026.102592 Languages: – Code: eng Text: English PhysicalDescription: Pagination: StartPage: 102592 Titles: – TitleFull: Best practices in demographic data collection for equity, diversity, and inclusion in rare disease research: A systematic review. Type: main BibRelationships: HasContributorRelationships: – PersonEntity: Name: NameFull: Sinan I – PersonEntity: Name: NameFull: Johnston M – PersonEntity: Name: NameFull: Marwaha A IsPartOfRelationships: – BibEntity: Dates: – D: 01 M: 07 Text: 2026 Jul Type: published Y: 2026 Identifiers: – Type: issn-electronic Value: 1530-0366 Numbering: – Type: volume Value: 28 – Type: issue Value: 7 Titles: – TitleFull: Genetics in medicine : official journal of the American College of Medical Genetics Type: main |
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