Hope for Sickle Cell Disease Challenge: Selected Solutions
Affiliations of team members and team mentors are provided because of Challenge requirements and do not necessarily reflect the representation of or endorsement by the named institutions.
Educational Game: “GRAPES” – Game to Raise Awareness for Patient/Provider/Public Education of SCD
Team: Amy Ouyang, Washington University in Louis (team captain); Veda Gadiraju, University of Washington School of Medicine; Manasa Gadiraju, University of Missouri-Kansas City School of Medicine; Vinitha Gadiraju, University of Colorado, Boulder; Gloria Liu, Rutgers University
Mentors: Melanie Fields, M.D., assistant professor of pediatrics, hematology and oncology, Washington University School of Medicine; and Sherif M. Badawy, M.D., assistant professor of pediatrics (hematology, oncology, and stem cell transplantation), Northwestern University Feinberg School of Medicine
Description: This trivia-based game equips patients and medical providers to make more informed decisions about managing sickle cell disease. It provides information about the causes of the disease, its symptoms, and its treatment. The game revolves around different sets of questions about sickle cell disease. Players move through these sets, or modules, and collect badges when they answer the questions correctly. Gameplay concludes with the sharing of patient resources (e.g., local member organizations of the Sickle Cell Disease Association of America, as well as the NHLBI, the American Society for Hematology, Be the Match, and various clinical trials).
Tool Overview Video: https://youtu.be/CkM5o8jkAeM
Children’s Book: “My Super Cells and Me!”
Team: Grace Schlemmer, Cleveland Institute of Art (team captain); Kerstyn Gay, Cleveland Institute of Art; Zoe Sekyonda, Case Western Reserve University
Mentors: Olabimpe Olayiwola, M.S., clinical research assistant, Case Western Reserve University; Umut Gurkan, Ph.D., Warren E. Rupp associate professor, Case Western Reserve University; Amma Owusu-Ansah, M.D., pediatric hematologist/oncologist, Case Western Reserve University
Description: This digital book inspires young people who have sickle cell disease by exploring how to live a life of optimism. The story is told through the eyes of a group of superheroes living with sickle cell disease. These superheroes use their powers to better cope with their illness and fight against stigmas, all while striving to live their lives to the fullest. In doing so, they find they also help make life better for those around them. Along with the personal stories and advice, the book presents simple-to-understand scientific information about sickle cell disease. Animations and interactive elements are featured throughout to appeal to middle and high school students who are used to learning in an increasingly digital world. This book is helpful for anyone interested in knowing more about sickle cell disease, but its main purpose is to encourage and help adolescents living with the disease.
Tool Overview Video: https://youtu.be/0ZKTUDVr-h8
iOS App: “SERGE – Sickle Cell Disease Education Resource & Gaming Experience”
Team: Dejai Hardin, New York University (team captain); Ivana Onema, Florida Agricultural and Mechanical University; Dinah Hardin, Duquesne University
Mentor: Dorice Vieira, M.L.S., M.A., M.P.H., associate professor, clinical outreach and graduate medical education librarian and associated faculty, College of Global Public Health, New York University Grossman School of Medicine
Description: SERGE is an iOS (Apple device) application designed to increase public awareness about sickle cell disease and help eliminate the stigma surrounding it. This user-friendly application features a fun, engaging gaming component geared towards K-12 students. It includes frequently asked questions and a section that offers the user additional information about sickle cell disease. Healthcare providers answer pressing questions by patients living with the disease, as well as their families and those wanting to learn more about pain management.
Tool Overview Video: https://youtu.be/A9AzzqxwkQM
iOS App: “SC & Me”
Team: Ololade Adebiyi, University of Pittsburgh School of Medicine (team captain); Megan Miller, University of Pittsburgh School of Education; Shruthi Venkatesh, University of Pittsburgh School of Medicine; Kristen Warner, Syracuse University
Mentors: Judith Morgan, Ph.D., associate professor of psychiatry and psychology, University of Pittsburgh; Charles Jonassaint, Ph.D., M.H.S., assistant professor of medicine, social work and clinical and translational science, University of Pittsburgh
Description: SC & Me is an iOS application that supports conversations children with sickle cell disease have with trusted others (e.g., family members, friends, teachers) about their diagnosis. It is designed to help children feel less worry discussing the disease, while empowering them to raise both their own and others’ awareness about it. The tool provides child-friendly, evidence-based information about sickle cell disease (e.g., answers to frequently asked questions and a dictionary of easy-to-understand explanations of common terms). It also includes access to testimonials from others living with the disease, as well as techniques to reduce the anxiety many with the condition often experience.
Tool Overview Video: https://youtu.be/scQiBGuLDpk
*TestFlight (https://apps.apple.com/us/app/testflight/id899247664), a beta testing service for iOS applications, is required to download this tool.