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

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.

A profile of The Clinical Course of Cognition and Comorbidity in Mild Cognitive Impairment and Dementia Study (The 4C study): two complementary longitudinal, clinical cohorts in the Netherlands

“…In addition, patients were asked whether they had noticed a change in four cognitive functions (memory, concentration, mental capacity, and vitality) during the last year [17]. Change in each function was scored on a 7-point Likert scale ranging from -3 (very strong decline) to +3 (very strong improvement).…”

Dutch Parelsnoer Institute-Cerebrovascular Accident (CVA) Study: A Large Multicenter Clinical Biobank with Standardized Collection and Storage

“…PSI is a cooperation of all eight Dutch University Medical Centers (UMCs) and aims at building large prospectively collected datasets with uniform and standardized storage of biomaterials for complex diseases. Currently, PSI covers 18 disease-specific cohorts called 'Pearls', and this number is still growing [2][3][4][5][6][7][8][9][10][11][12][13][14][15][16][17][18]. PSI is centrally organized and has an executive board for operational management to ensure collective standardization strategies.…”

“…Regarding all disease cohorts, the research projects based on PSI data and samples have led to several scientific publications [2][3][4][5][6][7][8][9][10][11][12][13][14][15][16]18].…”

The Parelsnoer Institute: A National Network of Standardized Clinical Biobanks in the Netherlands

“…In 2007, the Netherlands Federation of University Medical Centers (NFU) launched the Parelsnoer Institute (PSI) [1], with the aim of facilitating medical research and innovation ultimately leading to better diagnosis, treatment or even prevention of complex disorders [2][3][4][5][6][7][8][9][10][11][12][13][14][15][16][17]. PSI is a collaborative network of all eight Dutch University Medical Centers (UMCs), also known as academic teaching hospitals.…”

“…PSI releases data and samples to research projects on a regular basis. Thus far, the research projects have led to many scientific publications [3][4][5][6][7][8][9][10][11][12][13][14][15][16][17].…”