“Solving childhood cancer is a really big goal and it takes a lot of innovative thinking, but it also requires a lot of collaboration – a lot of sharing of knowledge,” said Liz and Jay Scott, ALSF’s co-executive directors and Alex’s parents. “And the wonderful thing about the Childhood Cancer Data Lab is that's exactly what it's designed to do.”
By: Shannon O'Connor
Since 2017, the Childhood Cancer Data Lab has been a key player in the advancement of childhood cancer research. Their mission is to provide pediatric cancer experts with the knowledge, data, and tools to reach their scientific goals. Now, Alex’s Lemonade Stand Foundation (ALSF)’s Data Lab is celebrating five years of empowering scientists to find cures for kids with cancer.
“Solving childhood cancer is a really big goal and it takes a lot of innovative thinking, but it also requires a lot of collaboration – a lot of sharing of knowledge,” said Liz and Jay Scott, ALSF’s co-executive directors and Alex’s parents. “And the wonderful thing about the Childhood Cancer Data Lab is that's exactly what it's designed to do.”
Before the conceptualization of the Data Lab, ALSF wanted to make a bigger impact to move childhood cancer research forward and get to cures faster. Liz and Jay asked their Scientific Advisory Board where experts saw challenges and potential in the field.
One resounding answer came back: utilizing and accessing data.
Over the next year, ALSF created the Childhood Cancer Data Lab to respond to those needs. Today, the team of data scientists, designers, engineers and community managers that make up the Data Lab construct tools that make vast amounts of data widely available, easily mineable, and broadly reusable. They foster collaboration between scientists, and train researchers to better understand their own data.
“As a part of Alex's Lemonade Stand Foundation, we're proud to make our tools open source and available to labs of all different sizes,” said Jaclyn Taroni, PhD, director of the Data Lab. “And we train researchers for free.”
In the last five years, the Data Lab has launched multiple projects to make data more accessible and expanded their data science training workshops so more researchers can see a clearer path to cures.
refine.bio
One of the ways the Data Lab is making data more accessible is through refine.bio. The Data Lab’s earliest project, refine.bio helps put biological data to use by normalizing data into one universal repository. refine.bio is enabling researchers around the world to quickly and easily compare their patient data models to thousands of datasets, supporting efforts to improve treatment options for children with cancer.
- Without refine.bio, the process of downloading and normalizing a dataset would take a researcher around two weeks to complete. It is estimated that the Data Lab has already saved more than 153 years of researcher time.
- More than 4,000 datasets have been downloaded by users, and over 1.3 million data samples have been harmonized. This is data that would likely cost $1.3 billion to generate. Users can access this data for free.
You can explore more at refine.bio.
Single-cell Pediatric Cancer Atlas (ScPCA)
In 2019, ALSF funded 10 awards for researchers working on single-cell profiling to hasten the discovery of better treatments by creating the Single-cell Pediatric Cancer Atlas. Single-cell profiling is a cutting-edge technique that makes it possible for researchers across the globe to examine individual cells and gain insight into how certain cells influence cancer progression and treatment response. These researchers generated data from patient samples of a broad range of cancer types, then shared it with the Data Lab to be uniformly processed and prepared for release.
The Data Lab recently launched the ScPCA Portal to make the data from these samples readily and publicly available for free, putting it in the hands of more investigators. Currently, 226 samples representing 27 cancer types are available.
You can learn more by visiting the ScPCA Portal here.
Data Science Training Workshops
The Data Lab developed a robust training program to empower childhood cancer researchers with cutting-edge data science techniques. These workshops teach researchers how to examine their own data, which helps them make more informed decisions about their research direction without having to wait – sometimes up to weeks – for outside analysis. Researchers not only learn data science skills, but also how to improve their ability to effectively communicate and collaborate with colleagues so to better share knowledge.
To date, the Data Lab has held in-person and virtual training workshops with nearly 200 researchers from 65 institutions around the world.
See more details about the training workshops here.
The Future of Childhood Cancer Research
“The Data Lab is trying to make pediatric cancer research as fast, reliable and robust as possible,” said Dr. Taroni. “And the reason we do that is because kids with cancer can't wait for cures.”
This is only the beginning. Five years of progress has laid the groundwork for all that is to come from the Data Lab, and there are big plans in motion.
Alongside their continued training efforts, the Data Lab team wants to train 200 more researchers in the next five years and expand the types of workshops that the Data Lab offers. They will continue to develop open-source products that are freely available to all researchers. They are looking to fund innovative models to increase the number of researchers they can equip with data science skills. All the while, they will keep conducting user research to find out what people need from the Data Lab to do the very best science they can.
“To think of how Alex’s front-yard lemonade stand has grown, not just into Alex's Lemonade Stand Foundation, but that we've been able to start important initiatives like the Childhood Cancer Data Lab, all with a singular goal focused on working together to find cures for all kids with cancer – that, to me, is just amazing,” said Liz.
Today, the Data Lab and childhood cancer research shows no sign of slowing down. With your support, ALSF’s accelerated research initiatives like the Data Lab can continue this momentum, until there are cures for all kids.
Donate to support the Data Lab and make more discoveries possible today