NEWS & EVENTS
scientist holding test tubes
2016 Annual Sickle Cell Disease Clinical Research Meetings
August 15 - 17, 2016
NIH Clinical Center
Building 10
Description

The NHLBI Annual Sickle Cell Disease Clinical Research Meetings provide a yearly forum for investigators, practitioners, and interested health care providers to discuss the progress of ongoing clinical trials, hear presentations about new developments in scientific and clinical aspects of SCD, and interact with other investigators and NHLBI Program Staff.

This year, the meeting will begin on August 15, 2016, and end on August 17, 2016.  There will be three symposiums, one on each day: Monday, August 15, 2016: Symposium: Stem Cell Transplantation in Sickle Cell Disease (Lakshmanan Krishnamurti, MD, Emory, organizer).  

Tuesday, August 16, 2016: Symposium for Data Science for Sickle Cell Disease and Health Care (Ellen Werner, PhD, NHLBI). This symposium will serve as a practical introduction to the data science for clinicians and health care providers. 

Wednesday, August 17, 2016: Symposium on Transfusion Medicine in Sickle Cell Disease (Ify Osunkwo, MD (University of North Carolina, Charlotte) and Julie Kanter, MD (Medical University of South Carolina, organizers).

There will be other meetings that will be occurring concurrently. For the complete schedule, please click on the agenda below.

This meeting is an opportunity to meet and exchange ideas with a diverse group of SCD investigators and providers, as well as NIH Program Officers in an informal setting.

Agenda

7:00 am – 5:00 pm
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Registration

8:00 am - 4:00 pm
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Symposium: Stem Cell Transplantation in Sickle Cell Disease

Dr. Lakshmanan Krishnamurti

9:30 am - 3:00 pm
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SCDTDP Leveraging 10 years Of Measurement & Data
(open to public)

Dr. Donnell Ivy

3:00 pm – 5:00 pm
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Closed to public

7:00 am – 5:00 pm
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Registration

Registration.

8:30 am – 8:40 am
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Welcome

 Introduction to Symposium and Data Science. Keith Hoots, MD & Ellen Werner. PhD, MA.

8:40 am - 9:20 am
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HHS Office of the National Coordinator, Health IT. Invited.

9:20 am - 9:50 am
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NIH Big Data and Data Science

Jennie Larkin, PhD.

9:50 am - 10:20 am
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AHRQ Outcome Measures Framework

David Niebuhr, MD, MPH, MSc.

10:20 am - 10:40 am
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Panel Q&A and Discussion

ONC, Drs. Larkin and Niebuhr

10:40am - 10:50am
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Break

10:50 am - 11:05am
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National Library of Medicine Tools and Resources

Mike Huerta, PhD.

11:05 am - 11:20 am
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National Cancer Institute Biomedical Informatics.

Dianne Reeves.

11:20 am - 11:35 am
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PhenX Toolkit from NHGRI, NHLBI, and others

Carol Hamilton, PhD/RTI

11:35 am - 11:50 am
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NHLBI TransOmics for Precision Medicine

Pankaj Qasba, PhD.

11:50 am - 12:05pm
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Panel Q&A and Discussion

Huerta, Reeves, Hamilton, Qasba.

12:05 pm - 1:00pm
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Lunch

12:20 pm - 12:50 pm
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PhenX Tutorial

Bring your lunch and laptop. Tabitha Hendershot and Helen Pan, RTI.

1:00pm - 2:00pm
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Special Presentation: The NHLBI Undergraduate Sickle Cell Challenge Champions and their Winning Apps

Helena Mishoe, PhD, MPH, Chitra Krishnamurti, PhD and Student Champions.

2:00 pm - 2:15pm
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NIH Patient Reported Outcomes (PROs)

James Witter, MD, PhD and Other Program Officers.

2:15pm-2: 30pm
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Pediatric SCD PROs and ASCQ-Me

Marsha Treadwell, PhD.

2:30pm-2:45pm
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Panel Q&A and Discussion

Drs. Witter, Treadwell, and other NIH Staff.

2:45pm-2:55pm
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Break

2:55 pm-3:05 pm
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HHS Sickle Cell Disease Data Subgroup.

Shondelle Wilson-Frederick, PhD, CMS.

3:05pm-3:15pm
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HRSA-Funded Sickle Cell Disease Association of America’s Registry

Kim Smith-Whitley, MD, MPH

3:15 pm-3:25 pm
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NHLBI SCD Implementation Program

Sharon Smith, PhD

3:25 pm - 3:35 pm
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CDC’s Surveillance Projects

Mary Hulihan, DRPH

3:35 pm - 3:50 pm
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Panel Q&A and Discussion

Drs. Wilson-Frederick, Smith-Whitley, S. Smith Hulihan

3:50 pm - 4:50 pm
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Potential of Data Science to Transform SCD Research and Health Services

All Presenters and Attendees.

4:50 pm - 5:00 pm
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Summary and Recommendations

Dr. Werner.

7:00 am – 5:00 pm
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Registration

8:00 am – 1:00 pm
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Sickle Cell Adult Care Provider Network Symposium: Transfusion Medicine & Sickle Cell Disease

Drs. Ify Osunkwo; Julie Kanter & Lakshmanan Krishnamurti.

8:00 am – 4:00 pm
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BMT CTN Stride Investigators & Coordinators Meeting.

Dr. Lakshmanan Krishnamurti.