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Newborn Screening for Cystic Fibrosis

Objectives/Agenda | List of Speakers

Meeting: Newborn Screening for Cystic Fibrosis 2003
Dates: November 20th and 21st, 2003
Location: Atlanta, Georgia
Co-sponsors: Centers for Disease Control and Prevention and the Cystic Fibrosis Foundation (CFF)

Objectives

  • Review and evaluate the scientific evidence on benefits and risks
    of newborn screening for cystic fibrosis

  • Review the role of screening, diagnostics, and follow-up issues in cystic fibrosis newborn screening decision making

  • Disseminate information about models and best practices for states that choose to adopt newborn screening for cystic fibrosis

Agenda

Disclaimer
The content of these web pages has not been revised or edited to conform with CDC or NCBDDD editorial policy and guidelines. Because of technical constraints, these transcripts are not a verbatim record of the presentations they represent.

 

Conference Replay *Update

An audiovisual presentation of the meeting proceedings is available below. Click on the session you would like to view in the agenda below.

Note:  These audiovisual clips are best viewed in Media Player 9 or RealOne Player.  If you have difficulties please email us for technical assistance.

Meeting proceedings will also be available through a special supplement in the Journal of Pediatrics and the CDC MMWR: Reports and Recommendations. Publication dates will be posted when available

Note
These videos are large files and may not work well for users with dial-up Internet access.

Day 1 – Review of the Evidence
 
Moderator: Coleen Boyle
 

8:00 AM Video | Transcript Welcome and Introductions – Coleen Boyle, Preston Campbell
8:15 AM Video | Transcript Criteria for Newborn Screening – Brad Therrell
8:30 AM Video | Transcript
PowerPoint Slides (Please note: slides use FRAMES)
Overview of Evidence-Based Decision-Making for Screening Interventions – Mark Helfand
8:45 AM Video | Transcript (Locke)
Transcript (Botkin)
Transcript (Cunningham)
Panel Discussion on Criteria for Evidence of Benefits – Tom Locke, Jeff Botkin, George Cunningham
9:15 AM Video | Transcript (Campbell)
Transcript (Accurso)
Epidemiology and Natural History of CF – Preston Campbell, Frank Accurso
10:00 AM Break
Moderator: Preston Campbell
10:15 AM Video |


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Overview of Published Evidence on Outcomes with Early Detection Wisconsin Clinical Trial - Phil Farrell
Observational Data from United States – Margaret Rosenfeld
11:15 AM
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International Experience
Published Evidence from Europe – Jeannette Dankert
Recent United Kingdom Experience – Anil Mehta
New Pulmonary Outcome Data and Early Therapy for Pancreatic Deficiency in Australia – Karen McKay
Opportunities for Early Intervention for Pseudomonas Aeruginosa – Niels Hoiby
12:15 PM Lunch
Moderator: Robert Wilmott
1:00 PM
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Transcript
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New Data in the United States
Survival Advantage – Hui-Chuan Lai
Cognitive Outcomes and Quality of Life – Rebecca Koscik
1:30 PM Video | Transcript (Helfand)
Transcript (Briss)
Transcript (Khoury)
Transcript (Desposito)
Panel and Discussion – Grading the Evidence
Mark Helfand, Peter Briss, Muin Khoury, Frank Desposito
Moderator: Ben Wilfond
2:30 PM
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Overview of Risks
Potential Harms – Norman Fost
False Positives and Psychosocial Risks - Jeannette Dankert
Delayed Diagnosis and the Family Perspective – Martin Kharrazi
3:15 PM Break    
3:45 PM Video | Transcript

Transcript (Parad)
Transcript (Fink)
Transcript (Ross)

Weighing Risks and Benefits: Screening Justification and Balancing Harm
Panel and Discussion – Richard Parad, Kenneth Fink, Lainie Ross
5:30 PM Adjourn
 
Day 2 – Screening, Diagnosis and Follow-Up: The Role They Play in Decision-Making

Moderator: Harry Hannon
7:50 AM Video | Transcripts Newborn Screening: The System – Brad Therrell
8:10 AM Video | Transcripts Planning Challenges for a Successful Screening Program – Anne Comeau
8:30 AM  


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Screening Issues - IRT, DNA Mutations, False Positives, False Negatives, Carriers, etc.
      Screening models
            Overview – Ben Wilfond
            Wisconsin – Gary Hoffman
            New York – Ken Pass
            Pediatrix – Dennis Freer
            Colorado – Marci Sontag

Performance Evaluation of Laboratories – Joanne Mei

10:00 AM Break
Moderator: Michele Puryear
10:15 AM
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Informed Consent
      How Important is Informed Consent? - Ellen Wright Clayton
      Implementation of Informed Consent in a Newborn Screening Program –
      Jean-Louis Dhondt
10:45 AM
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Diagnostics and Sweat Testing Referrals
      Wisconsin’s Approach - Mike Rock
      Massachusetts’ Approach - Richard Parad
11:15 AM
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Linking With CF Centers for Care of Diagnosed Infants
      Massachusetts Experience – Hank Dorkin
      New York experience – Robert Kaslovsky

Summary and Integration of Presented Information - Day 1 - Coleen Boyle

11:45 AM Lunch
Moderator: George Cunningham
12:30 PM

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Panel and Discussion – Implications for State Programs Considering Screening for CF
Oklahoma Experience - Pam King
Mississippi Experience - Jerry McClure
South Carolina Experience - Kathy Tomashitis
1:30 PM  


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Communication with Parents and Providers, Including Challenge of Genetic Counseling – Issues and Protocols
      Communication Perspective – James Dillard
      Massachusetts Experience – Anne Comeau
2:00 PM
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Costs of Screening
      Wisconsin Experience – Phil Farrell
      Panel and Discussion – Scott Grosse
2:30 PM Break    
3:00 PM Video |
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Transcript
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Summary/Display of the Data - Preston Campbell
Tying It Together: Weighing the Evidence for a Public Health Response to Cystic Fibrosis – Jeff Botkin
3:45 PM Video | Transcript Closing Remarks – Coleen Boyle,
4:00 PM Adjourn

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This page was last updated August 05, 2004


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The National Center on Birth Defects and Developmental Disabilities (NCBDDD) promotes the health of babies, children, and adults, and enhances the potential for full, productive living.  Our work includes identifying the causes of birth defects and developmental disabilities, helping children to develop and reach their full potential, and promoting health and well-being among people of all ages with disabilities.