helena mishoe, phd, mph associate director for research training and diversity joylene john-sowah,...
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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”
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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
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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 Hbβ0Thallasemia, or HbC].
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.
Sickle Cell Disease: An overview
Inheritance Genetically inherited HbSS,
HbSβ0Thallasemia, HbSC are most common
HbSS and HbS β0Thallasemia are most sever
Sickle Cell Trait have only one abnormal HbS
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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
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Sickle Cell Disease: An Overview
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
CTRIS - Center for Translation Research and Implementation Science
Center for Translation Research and Implementation
Science
Translation Research Paradigm: From Discoveries towards Implementation
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
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.
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Sickle Cell Disease Challenge: Purpose
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
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.
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Sickle Cell Disease Challenge: Goals
Team Mentor Team Captain Undergraduate members Student Team
Any undergraduate team in the United States-3 – 5 students- transdisciplinary
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Team Components
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 (http://
nhlbiscdchallenge.ideascale.com/) Team members can be international students.14
Team Components cont’d
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.
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Submission requirements cont’d
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.
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Submission requirements cont’d
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.
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Submission requirements cont’d
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)
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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.
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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.
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Awards cont’d
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.
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Important Dates
Questions?
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Thank you for joining us!