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NHLBI's Novel, Innovative Tools to Increase Public Awareness and Knowledge of Sickle Cell Disease Undergraduate Challenge

Artist's drawing of sickled blood cells.

National Heart, Lung, and Blood Institute, “Novel, Innovative Tools to Increase Public Awareness and Knowledge of Sickle Cell Disease Undergraduate Challenge”

NHLBI Sickle Cell Disease Challenge for Undergraduate Students Winners

The National Heart, Lung, and Blood Institute challenged college students across the nation to help develop creative new strategies to raise awareness about sickle cell disease. Some of the best answered the call, and NHLBI is pleased to announce the winners.

Learn more about them and their innovative ideas:

First Place: University of Pittsburgh

Title: Sickle Share

Team: Loren Hampton (Team Captain), Lola Adebiyi, Kendall Newman, Amanda Jacubowsky, and Charles Jonassaint (Mentor)

The University of Pittsburgh team created an iPhone and Android application called “Sickle Share,” designed to be an all-encompassing platform for sharing information about sickle cell disease. The app includes resources, facts about the condition, as well as videos from researchers sharing current information and patients telling their stories. The team included pre-med, film arts, social work, and psychology students. Watch this video to learn more: https://youtu.be/5s3a55c0U3g

 

Second Place: University of Notre Dame

Title: Snap Out of Sickle Cell

Team: Madeline Zupan (Team Captain), Katherine McIntyre, Roland Rebuyon, and Kasturi Haldar, PhD (Mentor)

This team is seeking to leverage Snapchat, a popular social media platform for sharing images and messages, to disseminate information about sickle cell disease. Team members designed what are known as geofilters, or graphics that overlay images, that will offer useful facts and information about sickle cell disease.  The Team is proposing to utilize their sickle cell disease geofilters June 19, World Sickle Cell Awareness Day. The team included individuals specializing in pre-professional studies in science, mechanical engineering, and science with a business concentration. Watch this video to learn more: https://youtu.be/iIM7GQIXyQk

 

Third Place: Connecticut College

Title: Blood Red Crescent Moon

Team: Joseph P. Donohue (Team Captain), Francisco Santana, Jermaine Doris, and Martha Grossel, PhD (Mentor)

The team wrote and performed an upbeat hip-hop song called “Blood Red Crescent Moon,” which was created to educate and inform broad and diverse audiences about sickle cell disease. The song addresses the non-contagious nature and the genetic basis of the disease; the racial misconceptions surrounding it; and how the symptoms, specifically pain and fatigue, affect the everyday life of afflicted individuals. Team members majored in biology, anthropology, and biology and music.

 

Honorable Mention: City College of New York

Title: Raising Sickle Cell Disease Awareness: Grassroots Campaign

Team: Rick Mathews (Team Captain), Reylyn Roldan, William Ray Vista, Italia Elena, and Francis Michael Villamater;  Gilda Barabino, PhD, Sabriya Stukes, Shereka Benton and Myckel Green (Mentors)

The team proposed a model for a grassroots sickle cell awareness campaign that could be scaled nationally. Students tested the model on the City College of New York campus and got promising results. The campaign involved word-of-mouth, social media, and on-campus events. The team included students majoring in biomedical engineering, digital design, advertising and public relations, chemistry and mathematics. 

 

Summary

Sickle cell disease [SCD] is the most common genetic disorder in the United States. There is a lack of awareness about SCD and associated complications. Where there is some awareness, there are also misunderstandings about the disease that need to be addressed such as the following: SCD is contagious; if one has the disease they will die young; if the parents are not sick from SCD, the children could never have SCD; and SCD only affects African Americans. Stigma also remains associated with SCD. The National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health, funds both research to improve the health of people with SCD and the training and career development of scientists and physicians dedicated to advancing the care of the afflicted. Research saves lives as demonstrated by the increased life expectancy and the decreased disease burden of those suffering with SCD who receive optimal therapy. To help address this problem, the NHLBI has launched this Challenge.

The goals of the Challenge are to: 1) generate novel, innovative tools that may be used to increase public awareness and knowledge of SCD and associated complications that could potentially improve patient care; 2) advance the field of implementation science through research training, mentoring, and highlighting the contributions of a new generation of undergraduate researchers using a systems science approach to address multi-faceted problems; and 3) encourage “team science” by providing undergraduate students valuable experiences to pursue science collectively as they engage in complex problem solving to improve health outcomes for SCD.

Informational Webinar

NHLBI recently held an informational webinar to provide additional details for challenge participants. To download a copy of the PowerPoint presentation from the webinar, please click below: 

Questions and answers about the webinar can be downloaded here: 

Rules for Participating in the Challenge

This Challenge is open to any “Student Team”, defined as a group of at least 3 and not more than 5 individuals each of whom is at least 18 years of age and currently enrolled as a full-time student pursuing an undergraduate or associates degree. The Student Team Captain must be a citizen or permanent resident of the United States.

The Student Team must also be trans-disciplinary, that is, composed of undergraduate students from diverse disciplines such as fine arts, performing arts, humanities, psychology, science, engineering, graphic design, IT (hardware, software), mathematics, statistics, environmental science, computational modeling, and others.

Dates 

Challenge announced: Oct. 21, 2015

Submissions accepted: Nov. 30, 2015 to March 7, 2016 11:59 p.m. PDT

Judging: March 14, 2016 to March 25, 2016

Winners notified by email:  April 5, 2016

Winners announced: April 19, 2016

Amount of the Prize

  • 1st Prize - $7,000, 2nd Prize - $5,000, 3rd Prize - $3,000
  • Up to an additional $2,000 to reimburse the Student Team for eligible expenses to register for and travel to the annual NHLBI/National Sickle Cell Disease meeting to present and demonstrate its winning entry.

Complete instructions; rules, terms and conditions; registration and submission details; and how submissions will be evaluated may be found here

Suggested Readings

Evidence-Based Management of Sickle Cell Disease. Expert Panel Report, 2014:  Guide to Recommendations. U.S. Department of Health and Human Services, National Institutes of Health, National Heart, Lung, and Blood Institute, Bethesda, MD)
Web site: http://www.nhlbi.nih.gov/health-pro/guidelines/sickle-cell-disease-guidelines

Rees DC, Williams TN, Gladwin MT, Sickle-cell disease. 2010; The Lancet, Volume 376, Issue 9757, 2018 – 2031

Serjeant G. The Natural History of Sickle Cell Disease. Cold Spring Harbor Perspectives in Medicine. 2013; 3(10):a011783-a011783. doi:10.1101/cshperspect.a011783.

Steinberg MH. Sickle Cell Disease. Ann Intern Med. 2011;155:ITC3-1. doi:10.7326/0003-4819-155-5-201109060-01003 .

Yawn B, Buchanan G, Afenyi-Annan A et al. Management of Sickle Cell Disease. JAMA. 2014;312(10):1033. doi:10.1001/jama.2014.10517.

Zempsky W, Treatment of Sickle Cell Pain, Fostering Trust and Justice. Commentary. (Reprinted) JAMA, December 9, 2009;22:2479-80.

Online Resources 

National Heart, Lung, and Blood Institute/National Institutes of Health: What is Sickle Cell Anemia:  http://www.nhlbi.nih.gov/health/health-topics/topics/sca/

Sickle Cell Disease Association of America Inc.:  http://www.sicklecelldisease.org/

National Human Genome Research Institute/National Institutes of Health:  http://www.genome.gov/10001219

Centers for Disease Control and Prevention:  http://www.cdc.gov/ncbddd/sicklecell/index.html

National Library of Medicine/National Institutes of Health:  http://ghr.nlm.nih.gov/condition/sickle-cell-disease

Sickle Cell Disease.  Tips for Healthy Living: http://www.nhlbi.nih.gov/sites/www.nhlbi.nih.gov/files/SCD%20Infographic%20with%20Tips%20for%20Healthy%20Living.pdf

Last Updated: September 9, 2015