View in EDS

Longitudinal natural history studies based on real-world data in rare diseases: Opportunity and a novel approach.

Saved in:
Bibliographic Details
Title: Longitudinal natural history studies based on real-world data in rare diseases: Opportunity and a novel approach.
Authors: Adang, Laura Ann1 (AUTHOR) adangl@chop.edu, Sevagamoorthy, Anjana1 (AUTHOR), Sherbini, Omar1 (AUTHOR), Fraser, Jamie L.2,3 (AUTHOR), Bonkowsky, Joshua L.4,5 (AUTHOR), Gavazzi, Francesco1 (AUTHOR), D'Aiello, Russel1 (AUTHOR), Modesti, Nicholson B.1 (AUTHOR), Yu, Emily1 (AUTHOR), Mutua, Sylvia1 (AUTHOR), Kotes, Emma1 (AUTHOR), Shults, Justine6,7 (AUTHOR), Vincent, Ariel8 (AUTHOR), Emrick, Lisa T.9,10 (AUTHOR), Keller, Stephanie11 (AUTHOR), Van Haren, Keith P.12 (AUTHOR), Woidill, Sarah1 (AUTHOR), Barcelos, Isabella1 (AUTHOR), Pizzino, Amy1 (AUTHOR), Schmidt, Johanna L.1 (AUTHOR)
Source: Molecular Genetics & Metabolism. May2024, Vol. 142 Issue 1, pN.PAG-N.PAG. 1p.
Database: Academic Search Ultimate
FullText Text:
  Availability: 0
Header DbId: asn
DbLabel: Academic Search Ultimate
An: 177035016
AccessLevel: 2
PubType: Academic Journal
PubTypeId: academicJournal
PreciseRelevancyScore: 0
IllustrationInfo
Items – Name: Title
  Label: Title
  Group: Ti
  Data: Longitudinal natural history studies based on real-world data in rare diseases: Opportunity and a novel approach.
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Adang%2C+Laura+Ann%22">Adang, Laura Ann</searchLink><relatesTo>1</relatesTo> (AUTHOR)<i> adangl@chop.edu</i><br /><searchLink fieldCode="AR" term="%22Sevagamoorthy%2C+Anjana%22">Sevagamoorthy, Anjana</searchLink><relatesTo>1</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Sherbini%2C+Omar%22">Sherbini, Omar</searchLink><relatesTo>1</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Fraser%2C+Jamie+L%2E%22">Fraser, Jamie L.</searchLink><relatesTo>2,3</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Bonkowsky%2C+Joshua+L%2E%22">Bonkowsky, Joshua L.</searchLink><relatesTo>4,5</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Gavazzi%2C+Francesco%22">Gavazzi, Francesco</searchLink><relatesTo>1</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22D'Aiello%2C+Russel%22">D'Aiello, Russel</searchLink><relatesTo>1</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Modesti%2C+Nicholson+B%2E%22">Modesti, Nicholson B.</searchLink><relatesTo>1</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Yu%2C+Emily%22">Yu, Emily</searchLink><relatesTo>1</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Mutua%2C+Sylvia%22">Mutua, Sylvia</searchLink><relatesTo>1</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Kotes%2C+Emma%22">Kotes, Emma</searchLink><relatesTo>1</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Shults%2C+Justine%22">Shults, Justine</searchLink><relatesTo>6,7</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Vincent%2C+Ariel%22">Vincent, Ariel</searchLink><relatesTo>8</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Emrick%2C+Lisa+T%2E%22">Emrick, Lisa T.</searchLink><relatesTo>9,10</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Keller%2C+Stephanie%22">Keller, Stephanie</searchLink><relatesTo>11</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Van+Haren%2C+Keith+P%2E%22">Van Haren, Keith P.</searchLink><relatesTo>12</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Woidill%2C+Sarah%22">Woidill, Sarah</searchLink><relatesTo>1</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Barcelos%2C+Isabella%22">Barcelos, Isabella</searchLink><relatesTo>1</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Pizzino%2C+Amy%22">Pizzino, Amy</searchLink><relatesTo>1</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Schmidt%2C+Johanna+L%2E%22">Schmidt, Johanna L.</searchLink><relatesTo>1</relatesTo> (AUTHOR)
– Name: TitleSource
  Label: Source
  Group: Src
  Data: <searchLink fieldCode="JN" term="%22Molecular+Genetics+%26+Metabolism%22">Molecular Genetics & Metabolism</searchLink>. May2024, Vol. 142 Issue 1, pN.PAG-N.PAG. 1p.
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=asn&AN=177035016
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1016/j.ymgme.2024.108453
    Languages:
      – Code: eng
        Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 1
        StartPage: N.PAG
    Titles:
      – TitleFull: Longitudinal natural history studies based on real-world data in rare diseases: Opportunity and a novel approach.
        Type: main
  BibRelationships:
    HasContributorRelationships:
      – PersonEntity:
          Name:
            NameFull: Adang, Laura Ann
      – PersonEntity:
          Name:
            NameFull: Sevagamoorthy, Anjana
      – PersonEntity:
          Name:
            NameFull: Sherbini, Omar
      – PersonEntity:
          Name:
            NameFull: Fraser, Jamie L.
      – PersonEntity:
          Name:
            NameFull: Bonkowsky, Joshua L.
      – PersonEntity:
          Name:
            NameFull: Gavazzi, Francesco
      – PersonEntity:
          Name:
            NameFull: D'Aiello, Russel
      – PersonEntity:
          Name:
            NameFull: Modesti, Nicholson B.
      – PersonEntity:
          Name:
            NameFull: Yu, Emily
      – PersonEntity:
          Name:
            NameFull: Mutua, Sylvia
      – PersonEntity:
          Name:
            NameFull: Kotes, Emma
      – PersonEntity:
          Name:
            NameFull: Shults, Justine
      – PersonEntity:
          Name:
            NameFull: Vincent, Ariel
      – PersonEntity:
          Name:
            NameFull: Emrick, Lisa T.
      – PersonEntity:
          Name:
            NameFull: Keller, Stephanie
      – PersonEntity:
          Name:
            NameFull: Van Haren, Keith P.
      – PersonEntity:
          Name:
            NameFull: Woidill, Sarah
      – PersonEntity:
          Name:
            NameFull: Barcelos, Isabella
      – PersonEntity:
          Name:
            NameFull: Pizzino, Amy
      – PersonEntity:
          Name:
            NameFull: Schmidt, Johanna L.
    IsPartOfRelationships:
      – BibEntity:
          Dates:
            – D: 01
              M: 05
              Text: May2024
              Type: published
              Y: 2024
          Identifiers:
            – Type: issn-print
              Value: 10967192
          Numbering:
            – Type: volume
              Value: 142
            – Type: issue
              Value: 1
          Titles:
            – TitleFull: Molecular Genetics & Metabolism
              Type: main
ResultId 1