A new Alzheimer’s disease data platform was launched today by Alzheimer’s Disease Data Initiative (ADDI). The platform, AD Workbench was initiated by ADDI, led by Gates Ventures and a consortium of partners. The cloud-based platform will enable scientists to accelerate discoveries and innovations for Alzheimer’s and related dementias.
We at Alzheimer’s Disease International (ADI) have been collecting socioeconomic data on the disease for years but there are two other sets of data that the world badly needs. The first is data provided by governments on core dementia indicators through their national health and social information systems. This is one of the goals of the WHO’s global dementia action plan and the function of its Global Dementia Observatory. Slowly but surely, we are getting there, as we report each year through our From Plan to Impact Report.
The second is data collected by scientists and researchers during the course of their work. This data is often not shared and in particular is not shared internationally. A major barrier to this has been the lack of political mobilisation behind dementia. Thus, this platform initiated under the auspices of Bill Gates and a number of companies and not-for-profit organisations is very promising for the 50 million+ people living with dementia around the world.
Crucially, improving data sharing for Alzheimer’s and related dementias has the potential to lead to better treatments and diagnostic tools, which are sorely needed. In the context of the Covid-19 pandemic, rapid population ageing and the uncertainty around therapeutic breakthroughs, now more than ever, greater data sharing is needed to spark innovative discoveries in AD research.
ADI’s Chief Executive Paola Barbarino said: “Resolving the complex jigsaw puzzle that is Alzheimer’s Disease and dementia requires a global effort. A lack of data sharing and of collaboration amongst researchers has long been one of our biggest hurdles.”
We have advocated for the need of global leadership in his direction -in particular in higher income countries- for a while now and are delighted that Gates Ventures and the consortium have taken this leap forward.
“We hope this will be an important step and encourage researchers all over the world to share datasets and research on the Workbench. The more we work together the sooner we will find a solution to benefit people living with dementia and their families.”
The AD Workbench will facilitate standardisation across data platforms and enable researchers to work with multiple datasets. Within the platform, users have a personalized workspace where they can ensure quality control, harmonise data, and analyse data within the platform.