NIH Record - National Institutes of Health

Challenge Spurs Ideas on Sickle Cell Awareness

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Large group of people smiles into camera.
Winning innovators at an NHLBI sickle cell disease research conference

A smartphone app, a social media campaign, a catchy tune—those were the concepts that took top honors after the National Heart, Lung, and Blood Institute challenged college students across the country to find innovative ways to raise awareness about sickle cell disease. The winning innovators recently presented their ideas at an NHLBI sickle cell disease research conference. 

Teams from the University of Pittsburgh, Notre Dame University and Connecticut College came to NIH to show how their imaginative concepts could help spread the word about the often devastating blood disorder, the most common genetic disease in the United States. The disease affects about 100,000 people here and millions more worldwide. But much of the public remains unaware of the condition; the NHLBI Undergraduate Sickle Cell Disease Challenge, which ran from October 2015 to March 2016, was designed to help fix that.  

The national call to action asked undergraduate students from various academic disciplines to form interdisciplinary teams so they could creatively collaborate. 

Students from the University of Pittsburgh took home first prize with a smartphone app called Sickle Share. The app features basic information about the condition as well as video interviews of researchers and a link to a sickle cell support group.

“Knowledge, research and access were the goals of the app,” said team captain Loren Hampton, who studies psychology. “We wanted to help offer a central place for information, to highlight research efforts and provide support to access.”

Notre Dame’s team used the social media app Snapchat, which is popular among high school and college students, to grab the attention of the public. Their Snap Out Sickle Cell campaign, which took second prize in the challenge, was featured on Snapchat during World Sickle Cell Awareness Day, June 19.

Roland Rebuyon, a Notre Dame team member, said part of the goal was to inspire the next generation of scientists now exploring career options at college. “We wanted to show that clinical research can be fun and exciting,” he said.

Connecticut College took a more lyrical approach to help quash stereotypes about sickle cell disease. The third-place team wanted to reinforce the idea that the condition is inherited and not contagious. Their contemporary song Blood Red Crescent Moon uses scientifically accurate lyrics to explain the basics and address misperceptions about the condition.

“Our idea was to use music, use language, use poetry in a creative approach,” explained Joseph Donohue, who studied microbiology and music at Connecticut College. “And we wanted to use language that is precise and correct to invite people into this conversation.”

Donohue, with his scientific and artistic background, was a great example of the cross-disciplinary problem-solving approach the challenge hoped to spark, said Dr. Helena Mishoe, NHLBI associate director for research training and diversity. The challenge was a team effort led by the Center for Translation Research and Implementation Science in conjunction with other NHLBI offices and divisions. 

“The challenge provided an opportunity to help educate communities, enhance students’ research skill sets and promote team science as it serves to enhance the lives of individuals with sickle cell disease,” Mishoe explained. “The hope is that widespread use of these tools will lead to greater knowledge and awareness of SCD.”

Mishoe said the winning teams will seek ways to improve the functionality of the respective tools and to expand access to larger audiences.

The challenge awarded each winning team a prize: first place $7,000, second place $5,000 and third place $3,000 in addition to reimbursement of travel expenses for each team up to $2,000. To learn more about the challenge, visit www.nhlbi.nih.gov/news/spotlight/fact-sheet/nhlbis-novel-innovative-tools-increase-public-awareness-and-knowledge-sickle-cell-disease.  

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