Meeting Agenda

November 8-9, 2001 ~ Atlanta, Georgia

Meeting Agenda | Full Meeting Summary | Meeting Synopsis | Meeting Participants

Meeting Agenda
SESSION I.	OVERVIEW AND OBJECTIVES OF THE CONFERENCE Moderator: Muin Khoury	PRESENTER
8:00 a.m.	Welcome and Introductions	Jeffrey Koplan
8:10 a.m.	Integrating Genetics Into Public Health	Muin Khoury
8:20 a.m.	Goals and Objectives of the Meeting	Mary Lou Lindegren
8:30 a.m.	Overview of Primary Immunodeficiency Diseases	Lisa Kobrynski
SESSION II.	PUBLIC HEALTH ASSESSMENT OF PRIMARY IMMUNODEFICIENCY DISEASES Moderators: Coleen Boyle and Celine Hanson
8:45 a.m.	Introduction	Coleen Boyle
IIA.	Public Health Assessment Efforts: Current and Past
8:55 a.m.	Primary Immunodeficiencies: Prevalence and Distribution	E. Richard Stiehm
9:10 a.m.	The National Registry of United States Residents with Primary Immunodeficiency Diseases	Jerry Winkelstein
9:25 a.m.	The ESID Registry and Immunodeficiency Mutation Databases	C.I. Edvard Smith
IIB.	Public Health Assessment Efforts: What Could be Done (Existing Databases, Surveillance, Examples of Other Surveillance Projects)
9:40 a.m.	BREAK
9:50a.m.	Use of Existing Databases to Study the Impact of Genetic Disease	Sonja Rasmussen
10:05 a.m.	Setting up Surveillance Systems: Birth Defects	Larry Edmonds
10:20 a.m.	Cystic Fibrosis Patient Registry	Preston Campbell
10:35 a.m.	CDC’s Comprehensive Prevention Program for Persons with Bleeding Disorders: A Model Approach	Sally Crudder
10:50 a.m.	Discussion
11:30 – 12:30 p.m.	LUNCH
12:30 p.m.	Perspectives	Richard Jackson
PUBLIC HEALTH INTERVENTIONS
SESSION III.	LABORATORY ISSUES Moderators: Tom Spira and Jennifer Puck
12:45 p.m.	Evaluation of Genetic Testing	James Haddow
1:00 p.m.	Primary Immunodeficiency Deficiencies: Diagnostic Tests	Hans Ochs
1:15 p.m.	Uses of Genetic Testing for Primary Immunodeficiency	Jennifer Puck
1:30 p.m.	Discussion
2:00 p.m.	BREAK
SESSION IV.	STRATEGIES TO INCREASE EARLY CLINICAL RECOGNITION Moderators: Lisa Kobrynskiy and Charlotte Cunningham-Rundles
2:10 p.m.	Prevention Effectiveness Framework for Evaluating Strategies for Earlier Identification of People with Primary Immunodeficiency Disorders	Scott Grosse
2:30 p.m.	Primary Immunodeficiency Diseases: Primary Care Perspective	Tracy Trotter
2:45 p.m.	Timely Diagnosis of Immunodeficiency	Mary Ellen Conley
3:00 p.m.	Targeting Primary Immunodeficiency Development of a Hospital-Based Scoring System to Expand Recognition	Charlotte Cunningham-Rundles
3:30 p.m.	Shrinking the Haystack: Approaches to Primary Immunodeficiency Disease for Clinicians	Richard Hong
3:45 p.m.	Discussion
SESSION V.	POTENTIAL FOR POPULATION-BASED SCREENING Moderators: Scott Grosse and Rebecca Buckley
4:10 p.m.	Population-Based Newborn Screening: Current and Emerging Screening Criteria	Nancy Green
4:25 p.m.	Human Severe Combined Immunodeficiency (SCID) and Potential for Newborn Screening	Rebecca Buckley
4:40 p.m.	Screening for Primary Immunodeficiency Disease: Potential Laboratory Strategies	Harvey Levy
4:55 p.m.	Overview of the CDC Newborn Screening Quality Assurance Programs	Harry Hannon
5:05 p.m.	Research Projects Using Dried Blood Spots	Robert Vogt
5:20 p.m.	Discussion
6:00 p.m.	ADJOURN
6:15 p.m.	Reception, Regency V, Hyatt Regency

November 9, 2001
SESSION VI.	PRIMARY IMMUNODEFICIENCY EDUCATIONAL PROGRAMS AND OUTREACH EFFORTS Moderators: Mary Foley, Marifran Mattson, Katherine Lyon-Daniel
8:00 a.m.	Individual Presentations
	* NIH Educational Outreach Efforts	Allan Lock
	* Mt. Sinai’s STRIDE Project	Barbara Brenner
	* Jeffrey Modell Foundation Physician Education Programs and Outreach Efforts	Fred Modell
	* Immune Deficiency Foundation Physician Education Programs	Jonathan Goldsmith
	* NORD’S Databases and Guide to Rare Diseases	Ed Gruson
9:15 a.m.	Discussion – Lessons Learned, Recommendations, and Next Steps for Future Primary Immunodeficiency Education and Communication Moderator: Katherine Lyon-Daniel and Marifran Mattson
SESSION VII.	DEVELOPMENT OF RECOMMENDATIONS FOR PUBLIC HEALTH ACTIVITIES AND RESEARCH
9:55 a.m.	Charge to Breakout Groups
10:00 a.m.	Break
10:10 a.m.	Group A – Centennial IV Public Health Assessment: Improvement of Existing Studies, Priorities for Additional Studies Group Chair, Celine Hanson Rapporteur, Mike Watson Presenter, Richard Stiehm Group B – Hanover Room A Public Health Intervention: Enhanced Early Clinical Recognition; Clinical Algorithms and Evaluation Strategies, Diagnostic Tests, Including Genetic, Developing Provider, Patient and Public Education Group Chair, Richard Hong Rapporteur, Chris Cunniff Presenter, Lisa Kobrynski Group C – Hanover Room B Potential Role for Population-Based Screening Group Chair, James Haddow Rapporteur, Brad Therrell Presenter, Anne Comeau
12:00-12:15	Prepare Group Reports
12:15-12:20	Groups B and C return to Centennial IV
12:20-1:00	Group Reports and Recommendations
1:00 p.m.	Closing Remarks	José Cordero