Digital Research Environment

International Data Collaboration Programs

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The Alzheimer’s Disease Data Initiative (ADDI) aims to move Alzheimer’s disease innovation further and faster by connecting researchers with the data they need to generate insights to inform development of new, better treatments and diagnostic tools

The Alzheimer’s Disease Workbench (ADWB), provided by Aridhia, makes it possible for AD and related dementias researchers around the world to share data, resources, and tools. It is open, inclusive, global, and easy to use.

“…even though the workbench is only now becoming broadly available, we’re already seeing huge benefits from it…”

Bill Gates

Aridhia has worked with ADDI and its partners over the past 15 months to help shape and develop the AD Workbench using the Aridhia DRE as the foundational platform infrastructure for the Workbench. The goal is to make it easy for the research community to discover data and make it easy for data contributors to publish their metadata to the community, broadening the reach and usefulness of their dataset. The AD Workbench is pioneering methods of data access recognising the diversity of data governance arrangements in place across the World. The AD Workbench is also making it easy for people to work with data, providing secure workspaces for scientists, clinicians, and data scientists to form teams and collaborate, share expertise and encourage re-use.

 

About The Alzheimer’s Disease Data Initiative

ADDI’s medical-research activities include: developing a data sharing platform and associated data science tools that will provide researchers with access to data regarding dementia-related diseases; connecting to data around the globe and securing permissioned access for researchers within the AD and related dementias field; using the platform and tools to conduct medical research and bringing the research community closer to detecting, treating and curing dementia-related diseases; and publishing the results of ADDI’s research, as well as those of other researchers, in order to educate the entire research community on promising areas of focus. ADDI will also aim to enhance or fill gaps in data sets, including enabling generation of demographically representative datasets.

The ADDI approach

ADDI’s mission is to move AD innovation further and faster by connecting researchers with the data they need to develop new and better treatments and diagnostic tools for AD and related dementias. To get there, a coalition of ten organizations collaborated to build the AD Workbench (to read more about the pilot phase, click here), a data platform infrastructure that allows researchers to:

Search existing datasets on existing platforms

Add new, multi-dimensional datasets

Combine data across multiple platforms

Analyse new and existing datasets using in-platform computational models

A globally coordinated, health data-led research response to tackle the COVID-19 pandemic

The International COVID-19 Data Alliance (ICODA) exists to enable and accelerate responsible research. At its heart is the “Workbench” – a new data platform provided by Aridhia that allows researchers to discover, access and analyse global multi-dimensional datasets while respecting confidentiality and privacy. The Workbench brings together a combination of tools and processes and can connect to regional or national data infrastructures used by ICODA members.

The platform will consolidate data and metadata from federated repositories to allow teams to work collectively on a focused research question. Data access and use is subject to rigorous data governance processes, based on the 5 Safes framework.

“Aridhia is privileged to be providing the Workbench technology and managed services for the International COVID-19 Data Research Alliance. We look forward to supporting scientists and data scientists around the world achieve insight into the many questions arising from the pandemic by providing safe and secure environments for trusted data sharing and collaborative analysis.”

David Sibbald, CEO of Aridhia

For researchers, ICODA and the Workbench offer a unique combination of features – direct, controlled and federated access to curated datasets and to the most advanced analytical tools. All of these are being developed and tested using “Driver Projects” – exemplar studies where ICODA is working in close partnership with data contributors and the research community to enable research into the questions they care about.

Access to the Workbench is provided free of charge once researchers have been accredited and project proposals approved. It is accessible to researchers from all parts of the world and we are particularly keen to welcome researchers from Low- and Middle- Income Countries (LMICs).

The Workbench is not just a place to access datasets. It will also act as a hub for the global research and innovation community, with access to expertise, training and support available – all with the aim of advancing ICODA’s vision to support the global research response to COVID-19.

 

About The International COVID-19 Data Alliance

ICODA brings together global expertise and best practice in health data research to enable a rapid response to the COVID-19 pandemic and future disease outbreaks. It is rapidly building on a network of international scientific and clinical expertise and the ability to provide access to diverse data sources. Members are organisations with a track record in health data research and are expected to sign up to principles for participation that draw on national and international best practice frameworks and recommendations.

About the Workbench

The Workbench will provide a trustworthy platform to access data for collaborative data science. It will have several key functions:

Allow researchers to search and find relevant data from multiple repositories across the world.

Allow researchers to request access to data from multiple sources to address specific research questions.

Allow data custodians to retain control of decisions about how data they hold can be accessed and used.

Allow researchers to form virtual teams to address specific questions or projects in private, secure workspaces provisioned to meet the requirements of their projects.