Inspire by ADDI | Fall 2022

EXECUTIVE DIRECTOR'S CORNER

EPND: A new and powerful resource for neurodegenerative disease research

We are excited to introduce the European Platform for Neurodegenerative Diseases (EPND) to the ADDI Community. The EPND project is a public-private partnership funded by the Innovative Health Initiative (IHI), which receives support from the European Union’s Horizon 2020 research and innovation program, and members of the European Federation of Pharmaceutical Industries and Associations (EFPIA). Launched in November 2021, EPND involves 29 organizations across Europe, Israel, and the United States that have a common objective: to change the way neurodegenerative disease research is utilized and accessed to accelerate impact.

Like ADDI, EPND addresses two of the biggest hurdles to innovation in neurodegenerative disease research including Alzheimer’s and Parkinson’s disease. First, there are not enough secure, accessible ways to share data and surface information about biological samples at scale. Second, infrastructure and research are often siloed, making it difficult to discover and share these valuable resources in secure and ethical ways. The goal is to break down barriers by creating a common point of access to discover and request interoperable data and samples from neurodegenerative disease research cohorts in Europe.

To achieve its goal, EPND is building connections to existing cohorts, platforms, and data sharing toolkits. One of these connections is with ADDI’s AD Workbench – which will be a key part of EPND’s infrastructure. It will offer researchers seamless access to a global network of interoperable datasets and enable collaboration with a broader user community who may contribute relevant or ancillary data to the platform. Additionally, connecting to the AD Workbench will allow researchers to access secure, cloud-based workspaces, use analytical tools, and work with others to curate, harmonize, and analyze data.

These same researchers will also have access to AD Connect, ADDI’s online community. AD Connect will allow members to promote and facilitate discussions, share knowledge, and inspire new ideas among EPND users and the broader ADDI community.

Bringing together researchers with a platform that enables permissioned data sharing and sample discovery creates profound possibilities for Alzheimer’s and neurodegenerative disease research. There is the potential to make data and samples accessible from more than 120,000 research participants from over 60 European cohorts across 19 countries.

The neurodegenerative disease research community can use this platform to foster multidisciplinary partnerships and integrate research initiatives, which can lead to transformative patient outcomes. The platform will be road-tested and refined thanks to a series of EPND biomarker case studies, supported by optimized procedures and protocols for collecting, processing, and storing data and samples. Case study datasets will be made available via the EPND platform, adding further value for the neurodegenerative disease research community.

ADDI is committed to supporting EPND as the platform grows in new and exciting ways. We are honored to be a part of this transformative moment in European neurodegenerative disease research and the global data sharing community.

For more updates, including the launch of EPND’s platform, sign up for AD Connect or the EPND newsletter.

Sincerely,

Tetsu Maruyama

Executive Director,

Alzheimer’s Disease Data Initiative

To help break down silos and foster greater collaboration, ADDI is planning a virtual roundtable series. We want the ADDI community to help drive this effort. Please take a moment to tell us what topics you are interested in and how you would like to participate. Our hope is to kick off our first roundtable in mid-November.

PARTNER SPOTLIGHT

FINGERS Brain Health Institute and ADDI: A growing collaboration to provide permissioned access to data from a global network of dementia prevention trials

ADDI and FINGERS Brain Health Institute (FBHI), a non-profit foundation in Stockholm, Sweden, share common goals – to advance scientific breakthroughs and accelerate progress towards new treatments and cures for Alzheimer´s disease (AD) and related dementias.

ADDI and FBHI are continuing to work closely together on a project involving World-Wide FINGERS (WW-FINGERS), a global network of dementia-prevention trials that aims to adopt and expand the Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (FINGER) model. FINGER seeks to address the ability of nutrition, physical exercise, cognitive training, social activities, and vascular/metabolic risk management to delay the onset of age-related cognitive impairment, including AD and related dementias. FBHI’s activities continue to recruit more sites in an increasing number of countries around the globe.

With the support of ADDI, one of FBHI’s key activities is operating the WW-FINGERS Scientific Helpdesk, which has been central to the coordination activities that support study design of local intervention trials. ADDI is working closely with FBHI to support the WW-FINGERS Scientific Helpdesk at FBHI. Since the establishment of the Scientific Helpdesk, members have grown from 25 to 47 countries, including 17 low- and middle-income countries. The Scientific Helpdesk has also launched the WW-FINGERS-SARS-CoV-2 survey, which includes more than 23,000 participants in more than 20 countries.

The successful collaboration has thus far led to key outcomes being presented at international meetings and in peer-reviewed journals. ADDI and FBHI are excited to move forward together on several collaborative activities. As an important part of these efforts, ADDI and FBHI are implementing the AD Workbench, which will support data sharing among all interested WW-FINGERS investigators to provide permissioned access to the global research community.

Please visit the FBHI and WW-FINGERS websites to learn more.

RESEARCHERS’ TOOLBOX

The NeuroToolKit App

We are pleased to announce that NeuroToolKit App (NTKApp) is now available on the AD Workbench!

Developed by Roche Diagnostics and leading academic and industry collaborators, and funded by ADDI, the NTKApp includes three interlinked modules that that will allow researchers to curate, analyze, and compare biomarker datasets and results. Those modules include:

• NTK Curate module: Biomarker data and clinical information undergoes quality control and standardization before being loaded into a personal, cloud-based workspace.

• NTK Analysis module: A suite of powerful, descriptive statistics to gain immediate insight into data.

• NTK Meta Analysis module: Data can be compared with other data across the community.

During our recent NTK Hackathon, participants used a beta version of the NTKApp. As a follow-up, participants were asked to provide user feedback, which was used to improve the current version that is now available. Some of those improvements include ability to edit custom variables in the curate module; ability to save working files as .doc, .pdf, html, and .rmd to better use content in presentations and reports; improved side-by-side visualization; ability to analyze data even if it was not curated – just to name a few.

Visit our website to learn more about accessing the NTKApp.

Be the first to get news, updates, and opportunities to engage with our community by following us on Twitter.

EVENTS

• The Alzheimer’s Research UK 2022 Clinical Conference October 14 | London, UK + Virtual

• Alzheimer Europe October 17-19 | Bucharest, Romania

• American Neurological Association 2022 October 22-25 | Chicago, USA

• Alzheimer Society International Congress November 1-4 | San Francisco, USA

• Society for Neuroscience – Neuroscience 2022 November 12-16 | San Diego, USA

• Clinical Trials on Alzheimer’s Disease* November 29-December 2 | San Francisco, USA

* ADDI is pleased to be a sponsor at this conference. If you are attending, please be on the lookout for more information about our organization.

You may find information about other conferences on AlzForum.

RESOURCES

The Alzheimer’s Association appropriate use recommendations for blood-based biomarkers (BBMs) in Alzheimer’s disease, by Oskar Hansson, et. al., Alzheimer’s and Dementia, July 31, 2022.

Blood-based biomarkers have recently shown promise in diagnosing and prognosing Alzheimer’s disease, as well as improving interventional trial designs. This resource discusses the further research needed before the widespread use of BBMs.

PUBLICATIONS

While there are numerous dementia related publications made available every day, below is a selection that may be of interest to the ADDI community.

Digital biomarkers

• An accurate fully automated panel of plasma biomarkers for Alzheimer’s disease, by Sebastian Palmqvist, et. al., Alzheimer’s and Dementia, August 11, 2022.

• A novel framework to estimate cognitive impairment via finger interaction with digital devices, by Ashley Holmes, et. al, Brain Communications, July 28, 2022.

• Blood extracellular vesicles carrying synaptic function- and brain-related proteins as potential biomarkers for Alzheimer’s disease, by Chen Tian, et. al., Alzheimer’s and Dementia, July 2, 2022.

Clinical trial recruitment and enrollment

• Recommendations to address key recruitment challenges of Alzheimer’s disease clinical trials, by Jessica Langbaum, et. al. (including Stacie Weninger, ADDI Advisory Board Member, Niranjan Bose, ADDI Advisory Board and Board of Directors Member, and Tetsuyuki Maruyama, ADDI Executive Director), Alzheimer’s and Dementia, August 10, 2022.

• Using Alzheimer’s disease blood tests to accelerate clinical trial enrollment, by Suzanne Schindler, et. al., Alzheimer’s and Dementia, August 7, 2022.

FINGERS program

• Dementia prevention: the potential long-term cost-effectiveness of the FINGER prevention program, by Anders Wimo, et. al., Alzheimer’s and Dementia, July 16, 2022.

You may find additional publications on AlzForum or ResearchGate.

“ASK ALOIS…”

Who is Alois? In 1906, Dr. Alois Alzheimer noticed changes in the brain tissue of a woman who had died of an unusual mental illness. This was the first identification of Alzheimer’s disease.

We use Dr. Alzheimer (Alois in this case) as our inspiration to wrap up our newsletter – to answer a question about Alzheimer’s disease, related dementias, data sharing, or the world at large. Maybe you can use this to stump your colleagues or friends?

Alois, what do the City of Burnaby, the movie Doc Hollywood, and Parkinson’s disease have in common?

Worldwide, more than 8 million people have Parkinson’s disease and one of its most well-known patient advocates is Michael J Fox. He spent his teenage years in Burnaby (a suburb of Vancouver, Canada) before moving to the United States to further his acting career. Spanning 40 years, his work includes well known movies and television shows such as Doc Hollywood, the Back to the Future trilogy, and Family Ties, just to name a few. In 1991, he was diagnosed with young-onset Parkinson’s disease.

Upon disclosing his condition in 1998, Michael J Fox committed himself to increase Parkinson’s research and later, launched the Michael J Fox Foundation for Parkinson’s Research. Today, the foundation is the world’s largest non-profit funder of Parkinson’s drug development.

Dedicated to advancing scientific breakthroughs in the treatment of Alzheimer's disease and related dementias.

We’re aiming to move Alzheimer’s disease (AD) 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 for AD and related dementias.

Learn more at AlzheimersData.org

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