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Established in July 2012, Enroll-HD is both an integrated clinical research platform and a worldwide observational study designed to meet the clinical research requirements necessary to develop therapeutics for Huntington's disease (HD). The platform offers participants a low-burden entry into HD research, providing a large, well-characterized, research-engaged cohort with associated clinical data and biosamples that facilitates recruitment into interventional trials and other research studies. Additional studies that use Enroll-HD data and/or biosamples are built into the platform to further research on biomarkers and outcome measures. Enroll-HD is now operating worldwide in 21 countries at 159 clinical sites across four continents-Europe, North America, Latin America, and Australasia-and has recruited almost 25,000 participants, generating a large, rich clinical database with associated biosamples to expedite HD research; any researcher at a verifiable research organization can access the clinical datasets and biosamples from Enroll-HD and nested studies. Important operational features of Enroll-HD include a strong emphasis on standardization, data quality, and protecting participant identity, a single worldwide study protocol, a flexible EDC system capable of integrating multiple studies, a comprehensive monitoring infrastructure, an online portal to train and certify site personnel, and standardized study documents including informed consent forms and contractual agreements.

Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Titel:	Enroll-HD: An Integrated Clinical Research Platform and Worldwide Observational Study for Huntington's Disease.
Autor/in / Beteiligte Person:	Sathe, S ; Ware, J ; Levey, J ; Neacy, E ; Blumenstein, R ; Noble, S ; Mühlbäck, A ; Rosser, A ; Landwehrmeyer, GB ; Sampaio, C
Link:	Zum Volltext
Zeitschrift:	Frontiers in neurology, Jg. 12 (2021-08-18), S. 667420
Veröffentlichung:	[Lausanne : Frontiers Research Foundation, 2010]-, 2021
Medientyp:	academicJournal
ISSN:	1664-2295 (print)
DOI:	10.3389/fneur.2021.667420
Sonstiges:	Nachgewiesen in: MEDLINE Sprachen: English Publication Type: Journal Article; Review Language: English [Front Neurol] 2021 Aug 18; Vol. 12, pp. 667420. <i>Date of Electronic Publication: </i>2021 Aug 18 (<i>Print Publication: </i>2021). References: Mov Disord. 2014 Sep;29(10):1281-8. (PMID: 25209258) ; Parkinsonism Relat Disord. 2015 Mar;21(3):169-78. (PMID: 25572500) ; JAMIA Open. 2019 Jan 07;2(1):123-130. (PMID: 31984350) ; Mov Disord. 2012 Aug;27(9):1083-91. (PMID: 22692795) ; Lancet Neurol. 2013 Jul;12(7):637-49. (PMID: 23664844) ; Phys Ther. 2019 Sep 1;99(9):1201-1210. (PMID: 31101920) ; Lancet Neurol. 2017 Aug;16(8):601-609. (PMID: 28601473) ; Mov Disord Clin Pract. 2016 Jun 22;4(2):212-224. (PMID: 30363395) ; PLoS One. 2012;7(2):e29522. (PMID: 22359536) ; Orphanet J Rare Dis. 2019 Jul 12;14(1):176. (PMID: 31300021) ; Cell. 2019 Aug 8;178(4):887-900.e14. (PMID: 31398342) ; J Neurol Neurosurg Psychiatry. 2008 Aug;79(8):874-80. (PMID: 18096682) ; Am J Med Genet B Neuropsychiatr Genet. 2011 Dec;156B(7):751-63. (PMID: 21858921) ; Sci Transl Med. 2020 Dec 16;12(574):. (PMID: 33328328) ; Neuroepidemiology. 2016;46(2):144-53. (PMID: 26824438) ; Cell. 2015 Jul 30;162(3):516-26. (PMID: 26232222) ; Eur J Neurol. 2018 Jan;25(1):24-34. (PMID: 28817209) ; Front Aging Neurosci. 2014 Apr 22;6:78. (PMID: 24795630) ; Mov Disord. 1996 Mar;11(2):136-42. (PMID: 8684382) ; Neurology. 2017 Feb 28;88(9):909-915. (PMID: 28148631) ; Orphanet J Rare Dis. 2010 Dec 20;5:40. (PMID: 21171977) ; J Neurol. 2012 Sep;259(9):1824-31. (PMID: 22274789) ; Lancet Neurol. 2009 Sep;8(9):791-801. (PMID: 19646924) ; EBioMedicine. 2015 Aug 04;2(10):1420-9. (PMID: 26629536) ; PLoS Curr. 2010 Sep 28;2:. (PMID: 20890398) ; Mov Disord Clin Pract. 2019 Aug 23;6(7):541-546. (PMID: 31538087) ; Parkinsonism Relat Disord. 2021 Feb;83:56-62. (PMID: 33476879) ; Arch Clin Neuropsychol. 2020 Aug 28;35(6):671-682. (PMID: 32407458) ; Clin Transl Sci. 2018 Jan;11(1):21-27. (PMID: 28796445) Grant Information: HCRW_RFPPB-16A-1298 United Kingdom HCRW HCRW_; MR/L010305/1 United Kingdom MRC_ Medical Research Council Contributed Indexing: Keywords: Enroll-HD; Huntington's disease; clinical research platform; disease network; longitudinal observational cohort study; registry Entry Date(s): Date Created: 20210906 Latest Revision: 20220716 Update Code: 20231215 PubMed Central ID: PMC8416308

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Enroll-HD: An Integrated Clinical Research Platform and Worldwide Observational Study for Huntington's Disease.