Two leading standards bodies launch Neuroscience Community, powering a global data network that will speed up answers in autism, Parkinson’s, addiction, and more

30 Nov 2023

The Global Alliance for Genomics and Health (GA4GH) and the International Neuroinformatics Coordinating Facility (INCF) welcome organisations worldwide to join the new community.

The Global Alliance for Genomics and Health (GA4GH) and the International Neuroinformatics Coordinating Facility (INCF) launched a new group to lay the groundwork for connecting global neuroscience and genomic data. 

Answering data-driven questions in neuroscience means dealing with complexity: in types of data, data management systems, the number and variety of conditions, ethical and legal requirements, and the genetic and biological conditions themselves. Even just aligning industry standards for neuroimaging and genomics can be a struggle.

To improve life for people with neurological conditions, we need to tackle the complexity together.

The new GA4GH & INCF Neuroscience Community unites collaborators from around the world to share best practices and improve standards that will expand responsible use of neuroscientific data, including genomic data. Interested organisations can join today.

Without connected data, neuroscience will remain painfully unexplained

A parent wants to understand why their autistic five-year-old wakes up multiple times a night, but doctors can’t explain. A person with early-onset Parkinson’s struggles to find a cocktail of medications that wards off the symptoms but doesn’t make them sleepy, irritable, and confused on the job. Someone has tried every treatment for severe depression that their insurance will pay for, but nothing works.

For people with neurological conditions and their families, the healthcare system can seem to offer more headache than help. 

Those with illnesses like Parkinson’s, addiction, depression, and epilepsy often report worse quality of life than others. So do many neurodivergent people, including autistic people and those with ADHD. For example, people with epilepsy are at greater risk of dying early. Many autistic children face gastrointestinal and sleep problems.

Progress has been slow to tailor healthcare for neurodivergent people and neurological patients. In part, that’s because researchers need lots and lots of data — and many different types of data — to answer neuroscience questions.

“To fully understand just one neurological patient or research participant, you need brain images, genomic sequences, gene expression data, socio-cultural factors, test results showing how they metabolise drugs, their overall health history and their family’s, and biomarker data like health and weight. Then add a detailed work-up of their phenotype, or the traits, behaviours, and symptoms they show,” said neuroscientist Randy McIntosh, Co-Lead of the GA4GH & INCF Neuroscience Community, Deputy Chair of the INCF Governing Board, and professor at Simon Fraser University.

“Now multiply that amount of data by thousands of people, which you need to get real predictive power in a study,” he said.

A single organisation is unlikely to collect or manage so much data. Yet sharing data between groups is difficult, in part for an important reason: stewarding someone’s data means taking great care to protect their privacy, wishes, and legal rights.

One solution is data visiting.

Instead of downloading a data file and transferring it to a faraway scientist, data visiting means that a scientist visits the data where it lives. These days, data visiting is done virtually: algorithms or other computer tools travel to an institution’s trove of data, or a secure environment where many institutions share their data, and run tests. Then they send the results to scientists with proper access permissions.

To visit the most data possible, you need a “federated network” — where you can study data housed in many different locations, all at once.

No matter your access method, you need to use data responsibly. Groups like the Wellcome-funded Brain Research International Data Governance & Exchange Program (BRIDGE) — a Neuroscience Community member — are studying how to properly follow laws and regulations when making data available worldwide. BRIDGE works with partners in Brazil, the US, South Africa, Switzerland, and the UK to develop resources for governing neuroscience data.

“Conditions and diseases don’t respect borders. If we want the lives of people with neurological conditions to improve, we can’t just look at data from one hospital or even one country. We have to study diverse data from around the world. With data visiting powered by federation and Global Alliance for Genomics and Health standards, clinicians and researchers can vastly expand their pool of data — while data stewards rest easy knowing they are protecting rights and following regulations,” said Peter Goodhand, CEO of GA4GH.

Making connections between neural networks: a new Neuroscience Community 

The GA4GH & INCF Neuroscience Community will connect international partners to develop the standards, collaborations, and systems needed to power data visiting across a global network.

The community will help get answers faster for patients and people everywhere, while respecting the human rights of people who donate their data. (Read the community’s in-progress charter.)

“For nearly two decades, INCF has developed standards and best practices to make neuroscience data FAIR: findable, accessible, interoperable, and reusable. Now we are eager to work with partners from genomics, like GA4GH, to ensure that our standards development efforts progress together and lead to the best possible science,” said Mathew Abrams, Director of Science and Training for INCF.

The GA4GH & INCF Neuroscience Community will expand neuroscience and genomic data networking around the world — ramping up what many members are already doing.

In Ontario, Canada, for example, several Neuroscience Community members run projects to link data across the province and the globe.

Take software company DNAstack. Working closely with the Autism Sharing Initiative (a GA4GH Driver Project), the company developed the Neuroscience AI network with its existing Omics AI software. The network makes it easier to find, analyse, and apply artificial intelligence to autism and other neuroscience datasets.

Then Azadeh Kushki, a researcher at Holland Bloorview Kids Rehabilitation Hospital — also a Neuroscience Community member — arrived. She used Neuroscience AI to make an important discovery: neurodivergent kids might be prescribed medication differently based on their ethnicity and family income.

The finding relied on a machine learning model trained on a federated network that follows GA4GH standards. Thanks to the Neuroscience Community, other groups will learn how to apply this powerful technique.

Another Neuroscience Community member, the Ontario Brain Institute, scaled up even further. Its Brain-CODE platform includes not only neurodevelopmental but also concussion, mental health, cerebral palsy, epilepsy, and neurodegenerative data. Brain-CODE houses data from more than 20,000 people who agreed to give researchers and other third parties access.

“For more than 10 years, the Ontario Brain Institute has fostered an integrated approach for neuroscience discovery to improve brain health. By combining ideas and expertise from patients, researchers, and industry, we’ve created a powerful ecosystem of innovation using data, analytics, and AI. But we can’t do this alone. With the GA4GH & INCF Neuroscience Community, we have a genuinely international opportunity to combine efforts and reach breakthroughs faster,” said Francis Jeanson, Head of the Centre for Analytics at Ontario Brain Institute and Co-Lead of the GA4GH & INCF Neuroscience Community.

The new Neuroscience Community is one of several Communities of Interest founded in recent years by GA4GH. These groups bring together global experts who focus on a specific topic, and who are eager to connect across borders and find a path to better data use.

“Great work is happening all over the world to understand neurological conditions, including their genomic underpinnings. The GA4GH & INCF Neuroscience Community will ensure that all those experts are sharing best practices, developing interoperable standards, and building connections across data,” said Angela Page, GA4GH Director of Strategy and Engagement. “People with neurological conditions have advocated for and deserve a global data network that will lead to better healthcare and improved quality of life.”

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About GA4GH

The Global Alliance for Genomics and Health (GA4GH) is an international, not-for-profit alliance formed in 2013 to accelerate progress in human health by expanding responsible use of genomic data. Bringing together 500+ leading organisations working in healthcare, research, patient advocacy, life science, and information technology, the GA4GH community creates frameworks and standards that power the responsible, broad, and democratised use of genomic and related health data.

About INCF

The International Neuroinformatics Coordinating Facility (INCF) network serves as a forum to collaboratively coordinate global neuroinformatics activities that guide and oversee the development of standards, best practices, ontologies, and other unifying activities. The mission of INCF network is to promote the uptake of FAIR data management practices in neuroscience through the development of standards and best practices that support open, FAIR, and citable neuroscience. INCF also provides training on how standards and best practices facilitate reproducibility and enables the publishing of the entirety of research output, including data and code.