| November 20 |
Review of the Evidence
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Moderator: Coleen Boyle |
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| 8:00 a.m. |
Welcome and Introductions |
Coleen Boyle and Preston Campbell |
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| 8:15 a.m. |
Criteria for newborn screening |
Brad Therrell |
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| 8:30 a.m. |
Overview of evidence-based decision-making for screening interventions |
Mark Helfand |
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| 8:45 a.m. |
Panel discussion on criteria for evidence of benefits |
Tom Locke, Jeff Botkin, George Cunningham |
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| 9:15 a.m. |
Epidemiology and Natural History of CF |
Preston Campbell and Frank Accurso |
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| 10:00 a.m. |
Break
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Moderator: Preston Campbell |
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| 10:15 a.m. |
Overview of published evidence on outcomes with early detection
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Wisconsin clinical trial
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Phil Farrell |
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Observational data from US |
Margaret Rosenfeld |
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| 11:15 a.m. |
International Experience
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Published evidence from Europe
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Jeannette Dankert |
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Recent UK experience
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Anil Mehta |
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New pulmonary outcome data and early therapy for pancreatic deficiency in Australia
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Karen McKay |
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Opportunities for early intervention for Pseudomonas aeruginosa |
Niels Hoiby |
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| 12:15 p.m. |
Working Lunch (Provided) |
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Moderator: Robert Wilmott |
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| 1:00 p.m. |
New data – US
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Survival advantage
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Hui-Chuan Lai |
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Cognitive outcomes and quality of life
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Rebecca Koscik |
| 1:30 p.m. |
Panel and discussion– Grading the Evidence |
Mark Helfand, Peter Briss, Muin Khoury, Frank Desposito
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Moderator: Ben Wilfond |
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| 2:30 p.m. |
Overview of Risks
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Potential harms
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Norman Fost |
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False positives and psychosocial risks
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Jeannette Dankert |
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Delayed diagnosis and the family perspective |
Martin Kharrazi |
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| 3:15 p.m. |
Break |
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| 3:45 p.m. |
Weighing Risks and Benefits: Screening justification and balancing harm
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Discussion panel
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Richard Parad, Kenneth Fink, Lainie Ross |
| 4:30 p.m. |
Summary and integration of presented information, discussion of conclusions |
Coleen Boyle |
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| 5:30 p.m. |
Adjourn |
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| November 21 |
Screening, Diagnosis and Follow-up: The Role They Play in Decision Making
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Moderator: Harry Hannon |
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| 7:50 a.m. |
Newborn Screening: The System |
Brad Therrell |
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| 8:10 a.m. |
Planning Challenges for a Successful Screening Program |
Anne Comeau |
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| 8:30 a.m. |
Screening Issues
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Screening models
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Ben Wilfond, overview
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Wisconsin
New York
Pediatrix
Colorado
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Gary Hoffman
Ken Pass
Dennis Freer
Marci Sontag |
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Topics: IRT, DNA mutations, false positives, false negatives, carriers etc.
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Performance evaluation of laboratories |
Joanne Mei |
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| 10:00 a.m. |
Break
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Moderator: Michele Puryear |
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| 10:15 a.m. |
Informed Consent
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How important is informed consent?
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Ellen Wright Clayton
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Implementation of informed consent in a newborn screening program
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Jean-Louis Dhondt |
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| 10:45 a.m. |
Diagnostics and Sweat Testing Referrals
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Wisconsin's approach |
Mike Rock
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Massachusetts' approach |
Richard Parad |
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| 11:15 a.m. |
Linking with CF Centers for care of diagnosed infants
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Massachusetts Experience |
Hank Dorkin
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New York experience |
Robert Kaslovsky |
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| 11:45 a.m. |
Lunch (Provided) |
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Moderator: George Cunningham |
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| 12:30 p.m. |
Rapporteur
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George Cunningham (CA)
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Panel – Implications for state programs considering screening for CF |
Pam King (OK), Jerry McClure (MS), Kathy Tomashitis (SC) |
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| 1:30 p.m. |
Communication with parents and providers, including challenge of genetic counseling – issues and protocols
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Communication perspective |
James Dillard
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Massachusetts experience |
Anne Comeau |
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| 2:00 p.m. |
Costs of screening |
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Wisconsin experience |
Phil Farrell
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Discussion |
Scott Grosse |
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| 2:30 p.m. |
Break |
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| 3:00 p.m. |
Tying it Together: Weighing the Evidence for a Public Health |
Response to Cystic Fibrosis – Jeff Botkin |
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| 3:45 p.m. |
Closing remarks |
Coleen Boyle & Preston Campbell |
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| 4:00 p.m. |
Adjourn |
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