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The Dutch Parelsnoer Institute - Neurodegenerative diseases; methods, design and baseline results

BACKGROUND: The Parelsnoer Institute is a collaboration between 8 Dutch University Medical Centers in which clinical data and biomaterials from patients suffering from chronic diseases (so called “Pearls”) are collected according to harmonized protocols. The Pearl Neurodegenerative Diseases focuses...

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Autores principales: Aalten, Pauline, Ramakers, Inez HGB, Biessels, Geert Jan, de Deyn, Peter Paul, Koek, Huiberdina L, OldeRikkert, Marcel GM, Oleksik, Ania M, Richard, Edo, Smits, Lieke L, van Swieten, John C, Teune, Laura K, van der Lugt, Aad, Barkhof, Frederik, Teunissen, Charlotte E, Rozendaal, Nico, Verhey, Frans RJ, van der Flier, Wiesje M
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2014
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4301568/
https://www.ncbi.nlm.nih.gov/pubmed/25551191
http://dx.doi.org/10.1186/s12883-014-0254-4
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author Aalten, Pauline
Ramakers, Inez HGB
Biessels, Geert Jan
de Deyn, Peter Paul
Koek, Huiberdina L
OldeRikkert, Marcel GM
Oleksik, Ania M
Richard, Edo
Smits, Lieke L
van Swieten, John C
Teune, Laura K
van der Lugt, Aad
Barkhof, Frederik
Teunissen, Charlotte E
Rozendaal, Nico
Verhey, Frans RJ
van der Flier, Wiesje M
author_facet Aalten, Pauline
Ramakers, Inez HGB
Biessels, Geert Jan
de Deyn, Peter Paul
Koek, Huiberdina L
OldeRikkert, Marcel GM
Oleksik, Ania M
Richard, Edo
Smits, Lieke L
van Swieten, John C
Teune, Laura K
van der Lugt, Aad
Barkhof, Frederik
Teunissen, Charlotte E
Rozendaal, Nico
Verhey, Frans RJ
van der Flier, Wiesje M
author_sort Aalten, Pauline
collection PubMed
description BACKGROUND: The Parelsnoer Institute is a collaboration between 8 Dutch University Medical Centers in which clinical data and biomaterials from patients suffering from chronic diseases (so called “Pearls”) are collected according to harmonized protocols. The Pearl Neurodegenerative Diseases focuses on the role of biomarkers in the early diagnosis, differential diagnosis and in monitoring the course of neurodegenerative diseases, in particular Alzheimer’s disease. The objective of this paper is to describe the design and methods of the Pearl Neurodegenerative Diseases, as well as baseline descriptive variables, including their biomarker profile. METHODS: The Pearl Neurodegenerative Diseases is a 3-year follow-up study of patients referred to a memory clinic with cognitive complaints. At baseline, all patients are subjected to a standardized examination, including clinical data and biobank materials, e.g. blood samples, MRI and cerebrospinal fluid. At present, in total more than 1000 patients have been included, of which cerebrospinal fluid and DNA samples are available of 211 and 661 patients, respectively. First descriptives of a subsample of the data (n = 665) shows that patients are diagnosed with dementia (45%), mild cognitive impairment (31%), and subjective memory complaints (24%). DISCUSSION: The Pearl Neurodegenerative Diseases is an ongoing large network collecting clinical data and biomaterials of more than 1000 patients with cognitive impairments. The project has started with data analyses of the baseline characteristics and biomarkers, which will be the starting point of future specific research questions that can be answered by this unique dataset.
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spelling pubmed-43015682015-01-22 The Dutch Parelsnoer Institute - Neurodegenerative diseases; methods, design and baseline results Aalten, Pauline Ramakers, Inez HGB Biessels, Geert Jan de Deyn, Peter Paul Koek, Huiberdina L OldeRikkert, Marcel GM Oleksik, Ania M Richard, Edo Smits, Lieke L van Swieten, John C Teune, Laura K van der Lugt, Aad Barkhof, Frederik Teunissen, Charlotte E Rozendaal, Nico Verhey, Frans RJ van der Flier, Wiesje M BMC Neurol Study Protocol BACKGROUND: The Parelsnoer Institute is a collaboration between 8 Dutch University Medical Centers in which clinical data and biomaterials from patients suffering from chronic diseases (so called “Pearls”) are collected according to harmonized protocols. The Pearl Neurodegenerative Diseases focuses on the role of biomarkers in the early diagnosis, differential diagnosis and in monitoring the course of neurodegenerative diseases, in particular Alzheimer’s disease. The objective of this paper is to describe the design and methods of the Pearl Neurodegenerative Diseases, as well as baseline descriptive variables, including their biomarker profile. METHODS: The Pearl Neurodegenerative Diseases is a 3-year follow-up study of patients referred to a memory clinic with cognitive complaints. At baseline, all patients are subjected to a standardized examination, including clinical data and biobank materials, e.g. blood samples, MRI and cerebrospinal fluid. At present, in total more than 1000 patients have been included, of which cerebrospinal fluid and DNA samples are available of 211 and 661 patients, respectively. First descriptives of a subsample of the data (n = 665) shows that patients are diagnosed with dementia (45%), mild cognitive impairment (31%), and subjective memory complaints (24%). DISCUSSION: The Pearl Neurodegenerative Diseases is an ongoing large network collecting clinical data and biomaterials of more than 1000 patients with cognitive impairments. The project has started with data analyses of the baseline characteristics and biomarkers, which will be the starting point of future specific research questions that can be answered by this unique dataset. BioMed Central 2014-12-31 /pmc/articles/PMC4301568/ /pubmed/25551191 http://dx.doi.org/10.1186/s12883-014-0254-4 Text en © Aalten et al.; licensee BioMed Central. 2014 This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Study Protocol
Aalten, Pauline
Ramakers, Inez HGB
Biessels, Geert Jan
de Deyn, Peter Paul
Koek, Huiberdina L
OldeRikkert, Marcel GM
Oleksik, Ania M
Richard, Edo
Smits, Lieke L
van Swieten, John C
Teune, Laura K
van der Lugt, Aad
Barkhof, Frederik
Teunissen, Charlotte E
Rozendaal, Nico
Verhey, Frans RJ
van der Flier, Wiesje M
The Dutch Parelsnoer Institute - Neurodegenerative diseases; methods, design and baseline results
title The Dutch Parelsnoer Institute - Neurodegenerative diseases; methods, design and baseline results
title_full The Dutch Parelsnoer Institute - Neurodegenerative diseases; methods, design and baseline results
title_fullStr The Dutch Parelsnoer Institute - Neurodegenerative diseases; methods, design and baseline results
title_full_unstemmed The Dutch Parelsnoer Institute - Neurodegenerative diseases; methods, design and baseline results
title_short The Dutch Parelsnoer Institute - Neurodegenerative diseases; methods, design and baseline results
title_sort dutch parelsnoer institute - neurodegenerative diseases; methods, design and baseline results
topic Study Protocol
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4301568/
https://www.ncbi.nlm.nih.gov/pubmed/25551191
http://dx.doi.org/10.1186/s12883-014-0254-4
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