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Research Open Science Open Research Award

The Netherlands Neurogenetics Database

Nienke Mekkes (BST, UMCG), Sander Bouwman (BST, UMCG), Eric Jan Hoekstra (BST, UMCG), Minke Groot (Netherlands Brain Bank), Alyse de Boer (BST, UMCG), Bart Eggen (BST, UMCG), Inge Huitinga (Netherlands Brain Bank), Annemieke Rozemuller (Dept. Pathology, Amsterdam UMC), Inge Holtman (BST, UMCG)

Open Research objectives/practices

The freely accessible Netherlands Neurogenetics Database (NND) App is a interactive website where everyone can access and analyze integrated clinical data from over 3000 people who have donated their brain to science. This allows for reproducible cross disorder brain research.

Introduction

The Netherlands Brain Bank collects and distributes human brain tissue of donors with a variety of neurological and psychiatric disorders for scientific research. An unique aspect of this brain bank is the wealth of information for each individual donor, such as their clinical history, clinical diagnoses, neuropathological reports, and genetic information. We believe that this information should be publicly available and easy to use, to allow researchers worldwide to perform their own tissue selections and analyses. The NND App is the kick-off of this open science initiative, and the NND will continue to grow over the years when new donors and data types become available.

Motivation

We believe that cross brain disorder research benefits from a worldwide open approach. The NND App forms an unique resource which can be of value to 1) clinical and epidemiological researchers studying symptomatology, 2) molecular and cellular biologists that make use of material from the NBB, 3) computational researchers that aim to build predictive models for the diagnosis and prognosis of brain disorders, and 4) researchers and staff at other brain banks for whom this framework can serve as inspiration towards data sharing and harmonization.

Lessons learned

It took a lot of dedication on both our side and the university IT side to set up a suitable environment in which we could share our data. It seemed that our request was quite unusual even. We believe that if a researcher has data that is of interest to others, it should be made easier to publish this online.

URLs, references and further information

https://nnd.app.rug.nl/app/NND
https://www⁠.medrxiv.org/content/10.1101/2022.09.22.22280158v1

Last modified:24 November 2023 10.45 a.m.