1. Helena Mishoe, PhD, MPH Associate Director for Research Training and Diversity Joylene John-Sowah, MD, MPH Medical Officer Center for Translation Research and Implementation Science National Heart, Lung, and Blood Institute December 21, 2015 “Novel, Innovative Tools to Increase Public Awareness and Knowledge of Sickle Cell Disease Undergraduate Challenge” 1

2.  Overview of Sickle Cell Disease  Center for Translation Research and Implementation Science  Description of Challenge  Who can participate  Submission requirements/Award  Important dates  Questions Overview 2

3. Sickle Cell Disease (SCD): An overview  Sickle cell disease (SCD) describes a group of genetically inherited red blood cell disorders.  People with sickle cell disease have an abnormal hemoglobin (Hb),hemoglobin S, in their red blood cells.  Additionally, they have a second abnormal hemoglobin, [e.g. Hemoglobin S, or Hbβ 0 Thallasemia, or HbC].

4. Sickle Cell Disease (SCD): An overview  70 – 100,000 persons affected with SCD in the US.  Most of those affected are of African ancestry or self-identify as Black.  A minority are of Hispanic or southern European, Middle Eastern, or Asian Indian descent.  Current lifespan increased since 1970, but still shortened compared to US population.

5. Sickle Cell Disease: An overview  Inheritance  Genetically inherited  HbSS, HbSβ 0 Thallasemia, HbSC are most common  HbSS and HbS β 0 Thallasemia are most sever  Sickle Cell Trait have only one abnormal HbS 5

6.  Clinical manifestations  Chronic pain with acute pain episodes  Chronic multisystem organ damage  Symptoms worsen with age  Shortened lifespan and decreased quality of life  Current treatment approaches  Hydroxyurea  Blood Transfusions  Bone Marrow Stem Cell Transplantation 6 Sickle Cell Disease: An Overview

7. CTRIS - Center for Translation Research and Implementation Science http://www.nhlbi.nih.gov/about/org/ctris CTRIS serves as a strategic focal point for T4 translation research, implementation science, and a research agenda that addresses both domestic and global health inequities, and research training for a workforce to achieve these goals. CTRIS Announcement, January 23, 2014

8. CTRIS - Center for Translation Research and Implementation Science Center for Translation Research and Implementation Science Translation Research Paradigm: From Discoveries towards Implementation

9. CTRIS - Center for Translation Research and Implementation Science  What is it and Why is it important?  Seeks to study, in a scientifically rigorous way, the best methods to move effective interventions into “real world settings.”  Takes an average of 17 years for only 14% of new scientific discoveries to enter day-to-day clinical practice.  Multi-layered studies  Community; Health care system  Providers; Patients; Families  Multifaceted studies  Interventions at several layers aligned with common outcome  Specific targets at each level  Engages stakeholders and all/key partners  Early and at each level  Population-level impact T4 Translation Research and Implementation Science

10.  The Challenge seeks to raise awareness about sickle cell disease and its associated complications and to improve the use of effective treatments in real world settings. 10 Sickle Cell Disease Challenge: Purpose

11. 1) Generate novel, innovative tools that may be used to increase public awareness and knowledge of SCD and its associated complications. 2) Encourage “team science” by providing undergraduate students valuable experiences to pursue science collectively as they engage in complex problem solving to improve health outcomes. 11 Sickle Cell Disease Challenge: Goals

12. 3) Advance the field of implementation science research through training, mentoring, and highlighting the contributions of a new generation of undergraduate researchers using a systems science approach to address multi-faceted problems. 12 Sickle Cell Disease Challenge: Goals

13.  Team Mentor  Team Captain  Undergraduate members  Student Team  Any undergraduate team in the United States -3 – 5 students -transdisciplinary 13 Team Components

14.  Team mentor must be an individual from the teaching staff (e.g. Professor, Associate Professor, Assistant Professor, Instructor, or a Teaching Assistant) at the same Academic Institution as the Student Team.  The Team Captain must be a citizen or permanent resident of the United States  Must log in and register team at NHLBI SCD Challenge – Idea Scale NHLBI SCD Challenge – Idea Scale ( http://nhlbiscdchallenge.ideascale.com/ )  Team members can be international students. 14 Team Components cont’d

15.  A 6 page written entry that clearly and concisely includes the following:  A concise and informative title.  A description of the tool, why it is innovative, the problem that the tool addresses, and the expected outcomes (goals) of using the tool.  A summary of the science and/or technology underlying the tool and its development. 15 Submission requirements cont’d

16.  A description of how the tool was tested among the population(s) of interest. Include a description of the study design and why it was selected.  A description of the populations/communities involved in the test. Tools that include proposals on how to reach a range of users, including those with disabilities and underserved populations are encouraged.  Preliminary data describing the outcome(s) of testing the tool in the population(s) of interest and whether the tool met the anticipated goals. 16 Submission requirements cont’d

17.  A 2 minute video that clearly articulates the problem and how the Student Team’s submission addresses the problem.  This short video is required even if the tool described above is also a video.  Must emphasize insights not provided in the written submission.  A set of seven (7) slides in PDF format that describes the submission. 17 Submission requirements cont’d

18. How will submissions be evaluated?  Five to seven judges  Judges will use the following 4 categories:  Significance (20 points)  Innovation (25 points)  Usability and design (25 points)  Quality of pilot test and outcomes (30 points) 18

19. Awards  1st Prize - $7,000  2nd Prize - $5,000  3rd Prize - $3,000  These winning teams will also receive up to an additional $2,000 to reimburse the Student Team for eligible expenses to register and travel to the annual NHLBI/National Sickle Cell Disease meeting to present and demonstrate its winning entry. 19

20.  Up to three Student Teams may also receive “Honorable Mentions” but no monetary prize, or support to register and travel to the annual NHLBI/National Sickle Cell Disease meeting will be provided.  “Honorable Mentions” winning entries will be recognized on the NHLBI website and/or other media venues. 20 Awards cont’d

21.  Submission period ends  March 7, 2016  Winners Notified by email: by April 5, 2016.  Winners Announced: April 19, 2016. -Financial awards can only be accepted by undergraduate team members who are US citizens/permanent residents. 21 Important Dates

22. Questions? 22 Thank you for joining us!