NINDS INSPIRE Workshop 06/20/2013 to 06/21/2013
6001 Executive Blvd
Bethesda, Maryland
United States
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Agenda

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NINDS INSPIRE Agenda & Roundtable Working Groups - COMPLETE WORKSHOP

Workshop Agenda (print version) (updated)

Working Group Descriptions (print version) (updated)


Panel I: Patient-Centered Study Design

06/20/2013 - 06/20/2013

 

 

Patient-Centered Study Design In Neurology
Session Chair:  Robert Griggs, MD

8:25 AM

Designing Patient-Centered Research for Rare Diseases
Robert Griggs, MD
University of Rochester Medical Center (URMC)

8:45 AM

Defining Patient-Centered Research and Engaging the Public To Drive the Agenda
David Hickam, MD
Patient Centered Outcomes Research Institute (PCORI)

9:00 AM

Perspectives on Integrating the Needs of Minority and Underserved Populations When Designing Research Questions and Protocols
Dorothy Edwards, PhD 
University of Wisconsin, Madison

9:15 AM

Panel Q & A

Robert Griggs, MD
David Hickam, MD
Dorothy Edwards, PhD

Lauren Verlizzo
Veronica Todaro

9:30 AM

Break, locate breakout session rooms


AM Roundtable Track 1a Day 1: Patient Centered Research

10:00 AM - 12:00 PM

06/20/2013 - 06/20/2013

Roundtable 1aD1


AM Roundtable Track 1b Day 1: How Much is Enough? Protocol Design & Burden Minimization

10:00 AM - 12:00 PM

06/20/2013 - 06/20/2013

Roundtable 1bD1


AM Roundtable Track 2 Day 1: Communication, Consent, & Outreach

10:00 AM - 12:00 PM

06/20/2013 - 06/20/2013

Roundtable 2D1


AM Roundtable Track 3 Day 1: Recruitment Planning

10:00 AM - 12:00 PM

06/20/2013 - 06/20/2013

Roundtable 3D1


AM Roundtable Track 4 Day 1: Study Management: Moving Beyond the Metrics

10:00 AM - 12:00 PM

06/20/2013 - 06/20/2013

Roundtable 4D1


Plenary I: The State of the Clinical Research Enterprise

06/20/2013 - 06/20/2013

 

 

The State of the Clinical Research Enterprise

1:05 – 1:10 PM

Introduction of Plenary I Speakers

tbd

1:10 - 1:55 PM

How Well Are We Meeting Public Health Needs with Clinical Research?  Changing the National Mindset
Ken Getz
Center for Information and Study on Clinical Research Participation

1:58 – 2:20 PM

Structural and Systemic Barriers to the Inclusion of Minorities in Neurological Research
Bernadette Boden-Albala, PhD
Mt. Sinai School of Medicine, New York, NY

2:20 – 2:45 PM

Plenary Q & A

2:45 – 3:00PM

Break, locate breakout session rooms


PM Roundtable Track 1a Day 1: Patient-Centered Research

3:00 PM - 4:30 PM

06/20/2013 - 06/20/2013

Roundtable 1aD1


PM Roundtable Track 1b Day 1: How Much Is Enough? Protocol Design & Burden Minimization

3:00 PM - 4:30 PM

06/20/2013 - 06/20/2013

Roundtable 1bD1


PM Roundtable Track 2 Day 1: Communication, Consent, & Outreach

3:00 PM - 4:30 PM

06/20/2013 - 06/20/2013

Roundtable 2D1


PM Roundtable Track 3 Day 1: Recruitment Planning

3:00 PM - 4:30 PM

06/20/2013 - 06/20/2013

Roundtable 3D1


PM Roundtable Track 4 Day 1: Study Management: Moving Beyond the Metrics

3:00 PM - 4:30 PM

06/20/2013 - 06/20/2013

Roundtable 4D1


Closed: Steering committee, roundtable facilitators, OCR staff

5:00-6:00pm

06/20/2013 - 06/20/2013

Wrap up


Panel II: Patient and Public Engagement

06/21/2013 - 06/21/2013

 

 

Patient and Public Engagement in the Research Enterprise
Session Chair: Walter Kernan, MD

7:45 AM

Introduction of Panel II

 tbd

7:50 AM

Educating the Public about CTs and the Commitment to Participate
Walter Kernan
Yale University, New Haven, CT

8:15 AM

Asking the Right Question: Communication and the Consent Process
Terry Albrecht, PhD
Wayne State University, Detroit, MI

8:40 AM

Inclusion, community engagement, and The RECRUIT Study
Barbara Tilley, PhD  
University of Texas, Houston

9:00 AM

Panel Q & A

Walter Kernan, MD
Teri Albrecht, PhD
Barbara Tilley, PhD
Bernadette Boden-Albala, PhD
Marian Emr (NINDS)

Rose Hallarn, ResearchMatch.org
Helen West, MMG
Jen Farmer, FARA
Dorita Downs (stroke survivor, Circle of Rights advocate)

9:30 AM

Break, locate breakout session rooms


AM Roundtable Track 1a Day 2: Patient-Centered Research

10:00 AM - 12:00 PM

06/21/2013 - 06/21/2013

Roundtable 1aD2


AM Roundtable Track 1b Day 2: How Much is Enough? Protocol Design & Burden Minimization

10:00 AM - 12:00 PM

06/21/2013 - 06/21/2013

Roundtable 1bD2:


AM Roundtable Track 2 Day 2: Communication, Consent, & Outreach

10:00 AM - 12:00 PM

06/21/2013 - 06/21/2013

Roundtable 2D2


AM Roundtable Track 3 Day 2: Recruitment Planning

10:00 AM - 12:00 PM

06/21/2013 - 06/21/2013

Roundtable 3D2


AM Roundtable Track 4 Day 2: Study Management: Moving Beyond the Metrics

10:00 AM - 12:00 PM

06/21/2013 - 06/21/2013

Roundtable 4D2


Panel III: More Than Just Metrics: Where The Quantitative Meets the Qualitative

1:00 PM - 2:20 PM

06/21/2013 - 06/21/2013

 

1:00 PM

Regroup, Introduction of Panel III

 

More than Just Metrics: Where The Quantitative Meets the Qualitative
Session Chair: Scott Powers, PhD

1:05 PM

The Intersection of Central Study Management and Local Site Needs: Aligning for Efficiency and Productivity
Scott Powers, PhD
University of Cincinnati

1:20 PM

Performance Metrics to Motivate or Demotivate Improvements in Productivity and Efficiency
Steve Mayo, DrPH
Emissary

1:35 PM

Identifying the Right Metrics and Benchmarks to Measure
Christine Pierre, PhD
Clinical Trials Transformation Initiative (CTTI)

1:50 PM

The Internet as a Research Platform: Ethical Implications
Elizabeth Buchanan, PhD
University of Wisconsin, Stout

2:05 PM

Panel Q & A

Scott Powers, PhD
Steve Mayo, DrPH
Christine Pierre, PhD
Elizabeth Buchanan, PhD

2:20 PM

Break, locate breakout session rooms


PM Roundtable Track 1a Day 2: Patient-Centered Research

2:30 PM - 3:30 PM

06/21/2013 - 06/21/2013

Roundtable 1aD2


PM Roundtable Track 1b Day 2: How Much is Enough? Protocol Design & Burden Minimization

2:30 PM - 3:30 PM

06/21/2013 - 06/21/2013

Roundtable 1bD2


PM Roundtable Track 2 Day 2: Communication, Consent, & Outreach

2:30 PM - 3:30 PM

06/21/2013 - 06/21/2013

Roundtable 2D2


PM Roundtable Track 3 Day 2: Recruitment Planning

2:30 PM - 3:30 PM

06/21/2013 - 06/21/2013

Roundtable 3D2


PM Roundtable Track 4 Day 1: Study Management: Moving Beyond the Metrics

2:30 PM - 3:30 PM

06/21/2013 - 06/21/2013

Roundtable 4D2


Presentations - Summaries from Roundtables, Closing

3:45pm -5:30pm

06/21/2013 - 06/21/2013


Closed: Steering committee, roundtable facilitators, OCR staff

5:30-6:00

06/21/2013 - 06/21/2013

Wrap up, assign tasks for follow-up, adjourn