K011 Enroll-HD platform biosample resources

<h3></h3> Enroll-HD is a clinical research platform that includes at its core a global observational study of Huntington’s disease (HD) families who are followed annually. As of May 1, 2024, 31,622 participants had been recruited from 189 sites in 23 countries spanning Europe, North America, Latin America and Australasia. 21,605 of those participants are still current (i.e. no mortality/end form). In its capacity of clinical research platform, Enroll-HD provides high quality clinical data and biosamples to qualified researchers in the HD research community via the Enroll-HD platform (https://enroll-hd.org/for-researchers/). Due to its longitudinal nature, more than 81,000 completed blood kits have been collected in Enroll-HD to date. Currently, 12 different types of biosamples collected in 3 different studies (Enroll-HD, HDCSF/HDClarity, TRACK-HD/TRACK-ON) are available via the Enroll-HD platform and additional biosample collections are in the planning stage. A new collection of PAXgene RNA blood tubes has recently been initiated; these samples should become available for research by the end of the year. Non-renewable biosample resources require review and approval by the Enroll-HD Scientific Review Committee (SRC) before release whereas renewable resources can be released without SRC review. All biosample distributions come with a material, shipping and handling fee and a biosamples use agreement must be signed before biosamples can be shipped. Currently available biosample resources: Lymphoblastoid cell lines (LCLs), DNA from LCLs, DNA from whole blood, Peripheral Blood Mononuclear Cells (PBMCs), buffy coat, EDTA plasma, LiHep plasma, CSF, cells from CSF, Serum, PAX gene RNA, buccal swabs.

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Publication Details

Published
2024-09-01
DOI
https://doi.org/10.1136/jnnp-2024-ehdn.360
Primary Topic
Scientific Computing and Data Management
Type
article
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article

K011 Enroll-HD platform biosample resources

Scientific Computing and Data Management
article

K011 Enroll-HD platform biosample resources

article en

Abstract

<h3></h3> Enroll-HD is a clinical research platform that includes at its core a global observational study of Huntington’s disease (HD) families who are followed annually. As of May 1, 2024, 31,622 participants had been recruited from 189 sites in 23 countries spanning Europe, North America, Latin America and Australasia. 21,605 of those participants are still current (i.e. no mortality/end form). In its capacity of clinical research platform, Enroll-HD provides high quality clinical data and biosamples to qualified researchers in the HD research community via the Enroll-HD platform (https://enroll-hd.org/for-researchers/). Due to its longitudinal nature, more than 81,000 completed blood kits have been collected in Enroll-HD to date. Currently, 12 different types of biosamples collected in 3 different studies (Enroll-HD, HDCSF/HDClarity, TRACK-HD/TRACK-ON) are available via the Enroll-HD platform and additional biosample collections are in the planning stage. A new collection of PAXgene RNA blood tubes has recently been initiated; these samples should become available for research by the end of the year. Non-renewable biosample resources require review and approval by the Enroll-HD Scientific Review Committee (SRC) before release whereas renewable resources can be released without SRC review. All biosample distributions come with a material, shipping and handling fee and a biosamples use agreement must be signed before biosamples can be shipped. Currently available biosample resources: Lymphoblastoid cell lines (LCLs), DNA from LCLs, DNA from whole blood, Peripheral Blood Mononuclear Cells (PBMCs), buffy coat, EDTA plasma, LiHep plasma, CSF, cells from CSF, Serum, PAX gene RNA, buccal swabs.

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Scientific Computing and Data Management
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