The road to successful people-centric research in rare diseases: the web-based case study of the Immunology and Congenital Disorders of Glycosylation questionnaire (ImmunoCDGQ).
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| Title: | The road to successful people-centric research in rare diseases: the web-based case study of the Immunology and Congenital Disorders of Glycosylation questionnaire (ImmunoCDGQ). |
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| Authors: | Francisco, Rita1,2,3 (AUTHOR), Brasil, Sandra1,2,3 (AUTHOR), Pascoal, Carlota1,2,3 (AUTHOR), Jaeken, Jaak1,4 (AUTHOR), Liddle, Merell1 (AUTHOR), Videira, Paula A.1,2,3 (AUTHOR), dos Reis Ferreira, Vanessa1,2,3 (AUTHOR) sindromecdg@gmail.com |
| Source: | Orphanet Journal of Rare Diseases. 3/24/2022, Vol. 17 Issue 1, p1-18. 18p. |
| Database: | Academic Search Ultimate |
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| FullText | Links: – Type: pdflink Text: Availability: 1 |
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| Header | DbId: asn DbLabel: Academic Search Ultimate An: 155953974 AccessLevel: 2 PubType: Academic Journal PubTypeId: academicJournal PreciseRelevancyScore: 0 |
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| Items | – Name: Title Label: Title Group: Ti Data: The road to successful people-centric research in rare diseases: the web-based case study of the Immunology and Congenital Disorders of Glycosylation questionnaire (ImmunoCDGQ). – Name: Author Label: Authors Group: Au Data: <searchLink fieldCode="AR" term="%22Francisco%2C+Rita%22">Francisco, Rita</searchLink><relatesTo>1,2,3</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Brasil%2C+Sandra%22">Brasil, Sandra</searchLink><relatesTo>1,2,3</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Pascoal%2C+Carlota%22">Pascoal, Carlota</searchLink><relatesTo>1,2,3</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Jaeken%2C+Jaak%22">Jaeken, Jaak</searchLink><relatesTo>1,4</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Liddle%2C+Merell%22">Liddle, Merell</searchLink><relatesTo>1</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Videira%2C+Paula+A%2E%22">Videira, Paula A.</searchLink><relatesTo>1,2,3</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22dos+Reis+Ferreira%2C+Vanessa%22">dos Reis Ferreira, Vanessa</searchLink><relatesTo>1,2,3</relatesTo> (AUTHOR)<i> sindromecdg@gmail.com</i> – Name: TitleSource Label: Source Group: Src Data: <searchLink fieldCode="JN" term="%22Orphanet+Journal+of+Rare+Diseases%22">Orphanet Journal of Rare Diseases</searchLink>. 3/24/2022, Vol. 17 Issue 1, p1-18. 18p. |
| PLink | https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=asn&AN=155953974 |
| RecordInfo | BibRecord: BibEntity: Identifiers: – Type: doi Value: 10.1186/s13023-022-02286-w Languages: – Code: eng Text: English PhysicalDescription: Pagination: PageCount: 18 StartPage: 1 Titles: – TitleFull: The road to successful people-centric research in rare diseases: the web-based case study of the Immunology and Congenital Disorders of Glycosylation questionnaire (ImmunoCDGQ). Type: main BibRelationships: HasContributorRelationships: – PersonEntity: Name: NameFull: Francisco, Rita – PersonEntity: Name: NameFull: Brasil, Sandra – PersonEntity: Name: NameFull: Pascoal, Carlota – PersonEntity: Name: NameFull: Jaeken, Jaak – PersonEntity: Name: NameFull: Liddle, Merell – PersonEntity: Name: NameFull: Videira, Paula A. – PersonEntity: Name: NameFull: dos Reis Ferreira, Vanessa IsPartOfRelationships: – BibEntity: Dates: – D: 24 M: 03 Text: 3/24/2022 Type: published Y: 2022 Identifiers: – Type: issn-print Value: 17501172 Numbering: – Type: volume Value: 17 – Type: issue Value: 1 Titles: – TitleFull: Orphanet Journal of Rare Diseases Type: main |
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