By Kaitlin Vortherms
New and exponentially increasing amounts of biomedical research can yield valuable insight into rare diseases, cures, devices, procedures, and more. This growth, however, can sometimes overwhelm scientists and the public alike: the amount of scientific research published in 2014 was more than triple the amount published in 1990, and this trend continues today. While this research has the potential to lead to valuable, lifesaving insights, it is not only hard for scientists to keep up and difficult for the average citizen to understand, but it is almost impossible to implement. There’s just too much…. or is there?
One challenge to data analysis is so-called unstructured data, such as text. Because it does not have a predefined structure, this type of data has traditionally been difficult to analyze through computer algorithms. Structured data on the other hand, such as numbers or dates, is easier for computers to read.
It turns out people are better than computers at making the complex connections necessary to yield insights from unstructured data, and a new citizen science program aims to harness people power to eventually identify key terms in the biomedical literature.
The Mark2Cure team saw an opportunity for discovering new, meaningful connections in this unstructured biomedical literature by using a citizen science approach. The team developed a program that trains people of all backgrounds to find hidden connections in this literature, helping to bring structure to the unstructured.
“The goal was always to bring in citizen science,” said Ginger Tsueng, Mark2Cure’s science outreach project manager. Users contribute to discovering connections and, potentially, new treatment strategies, by tagging research articles with key terms that help to make them searchable.
Tsueng said that you don’t have to have a biomedical background to contribute. “A lot of our users don’t come from a science background but they quickly become experts in the community.” It is the curious ones that take the time to look information up and ask questions that contribute the most, she says. “They learn a lot and grow a lot, and it’s impressive to see them correct other data resources”.
Mark2Cure’s current campaign is focused around finding new information about the NGLY1 deficiency, a rare genetic disorder where patients produce little to no N-glycanase, which helps to remove proteins that are not functioning properly. Without this enzyme, people exhibit abnormal tear production, a movement disorder (choreoathetosis), liver disease and more. There is currently no cure for this genetic disorder, which is why finding insights and discoveries through literature is so important.
“The rare disease community actually read the literature a lot because there are no other good sources for their disease” Tsueng says. By mining the available literature, there is hope of finding new connections that can give the rare disease community more answers. In fact, the NGLY1 community played a vital role in helping Mark2Cure launch their beta because they saw value in what this citizen science project could mean for their community. Since then, additional communities have reached out to Mark2Cure about being included in future campaigns.
To participate in helping to discover potentially lifesaving connections for the NGLY1 community, you can check out Mark2Cure’s current campaign at their SciStarter project page, website, and follow their research journey on twitter.
Kaitlin is a sustainable engineer with a passion for empathy driven design. She recognizes the need for STEM fields to communicate their messages more effectively in order to enhance community engagement and a build a better world.
Want more citizen science? Check out SciStarter’s Project Finder! With 1100+ citizen science projects spanning every field of research, task and age group, there’s something for everyone!