Guiding the Next Generation of ALS Researchers

Answer ALS holds the largest ALS patient data resource in the world, and it is helping aspiring young scientists get their start. They come to Answer ALS drawn by the science, sometimes for personal reasons, and Answer ALS is giving them the mentorship, the scientific guidance, and the data required to take on their first research on the disease.

Kelsey Valentine, a data scientist at Answer ALS, handles much of that work. She fields questions and access requests from users, and increasingly the requests come from university students, high schoolers, and at least one middle schooler.

These students are teaching themselves, using free online tools now available to learn to code and learn about the research. Valentine points to that self-teaching as part of why more young people interested in science are reaching out. Their starting points and ideas, she says, are often further along than expected.

Releasing clinical data responsibly requires two things from any requester: a secure place to store it, and an institution or legal representative who can attest to the project and confirm the data will be handled responsibly. High schoolers rarely have both. A teacher sometimes can help, but most students have no place to analyze the data and no one to serve as a principal investigator or business official.

Valentine knows exactly what it feels like to be in the position of these students. She navigated the conventional path, working in a lab, to earn access to this information over several years. She studied bioengineering at UC Irvine, added a computer science focus late in the degree, and connected the dots to where the two meet in bioinformatics and genetics. She worked in the Fraenkel Lab at MIT, which produces epigenetic data for the Answer ALS portal, spending more than a year there as a research assistant and lab technician. She initially planned to apply to PhD programs before discovering she was more interested in the clinical side, working directly with the people the research is meant to help and seeing how that research becomes treatment, which led her to apply to medical school. A master’s at Boston University followed, and she started medical school at Virginia Tech this past July. Valentine had a university and a lab behind her. Until recently, a student without that backing could not get the data or the institutional sponsor that any ALS research project requires.

To remove barriers for high school students and other individuals working independently, Answer ALS serves as the sponsoring institution for approved projects, eliminating the need for students to identify a principal investigator or institutional sponsor. Students access the data through a secure online research workspace provided by the Alzheimer’s Disease Data Initiative, which enables them to analyze de-identified clinical data without downloading or directly handling sensitive participant information.

“A lot of times they didn’t have a person who could really serve as the PI or business official, but they had really great ideas, they were really impressive, and so we wanted to make it possible for them to pursue these projects,” Valentine said.

Answer ALS holds a huge amount of data, enough to overwhelm a high schooler seeing it for the first time. To break it down, Valentine has an initial call with each student, walking through what the data is and learning what the student wants to study. From there she helps them work out which data would be useful for their particular project, so they are not bogged down with files they will never use. She holds regular check-ins with the students afterward, working through whatever they are struggling to understand or process.

Many students want clinical data on disease progression, which Answer ALS holds, though the projects vary. Some work with the omics data, and one, partnered with a lab, wanted to grow IPSC lines. More often the questions are basic: what is this data, what do I need from it, and what separates genomics, epigenomics, and transcriptomics. To address these questions, Valentine is recording short YouTube videos on the foundational concepts, planning workshop-style sessions on the technical side of analysis, and developing a mentorship program that connects students with researchers who have expertise in their area. A website is also in progress, so students can find the program and learn how to begin a project.

Established labs cannot always provide this essential backing, Valentine says, as there is a finite capacity to formally sponsor a student and take on a new project.

Rather than asking individual laboratories to take on additional trainees, Answer ALS leverages its network of ALS researchers to match students with scientists whose expertise aligns with each project. Willing researchers serve as mentors, guiding students through the scientific process and helping them develop meaningful, data-driven research questions. Answer ALS complements this support with educational videos, technical workshops, and online resources that introduce students to ALS research and data analysis.

Answer ALS works with researchers across academia, industry, and nonprofit organizations, and the team is currently building out this mentorship program. They have secured several mentors and are actively looking for more, developing opportunities that would be difficult for any single laboratory to provide on its own.

“Having someone who can give you information and guidance is a real game changer when you’re just starting research, and you just don’t know what you don’t know,” Valentine said.

“The students who come to our site are so bright,” she continued. “I feel like we really helped to foster their projects and give them the space to explore, but their research is really impressive, and I don’t always have all the answers for them, which is exactly why we are working so hard to find them dedicated mentors.”

Students who want to learn more about Answer ALS’s mentorship program or start a project can reach out to Kelsey Valentine at Answer ALS at kelsey@onpointsci.com