Abstract
BackgroundThe 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.MethodsThe 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%).DiscussionThe 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.
Highlights
The Parelsnoer Institute is a collaboration between 8 Dutch University Medical Centers in which clinical data and biomaterials from patients suffering from chronic diseases are collected according to harmonized protocols
Research in Alzheimer's disease (AD) has long time been hampered by the fact that neither plaques nor tangles could be measured during life
We describe the design and methods of the Pearl Neurodegenerative diseases as well as baseline descriptive variables
Summary
The parelsnoer institute The Parelsnoer Institute (PSI; www.string-of-pearls.org) is a collaboration of the eight Dutch University Medical Centers (UMCs), designed to create an infrastructure for collection of clinical data and biomaterial from patients with chronic diseases. Results from several large studies have demonstrated that a combination of CSF biomarkers and neuroimaging measures is useful in predicting the likelihood of developing AD [6]. This has resulted in their incorporation in new diagnostic criteria, as a means to provide evidence for the presence of Alzheimer pathology [7,8,9]. Preclinical AD is the proposed terminology to describe the stage when the earliest brain changes have begun, but there are no clinical signs yet [13]
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