Skip directly to local search Skip directly to A to Z list Skip directly to navigation Skip directly to site content Skip directly to page options
CDC Home

Events

Meeting Report:
Applying Genetics and Public Health Strategies to Primary Immunodeficiency Diseases

November 8-9, 2001 ~ Atlanta, Georgia

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

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

 

 

Contact Us:
  • Centers for Disease Control and Prevention
    1600 Clifton Rd.
    Atlanta, GA 30333 USA
    800-CDC-INFO (800-232-4636)
  • Additional information for Public Health Genomics is available on our contact page.
USA.gov: The U.S. Government's Official Web PortalDepartment of Health and Human Services
Centers for Disease Control and Prevention   1600 Clifton Road Atlanta, GA 30329-4027, USA
800-CDC-INFO (800-232-4636) TTY: (888) 232-6348 - Contact CDC–INFO
A-Z Index
  1. A
  2. B
  3. C
  4. D
  5. E
  6. F
  7. G
  8. H
  9. I
  10. J
  11. K
  12. L
  13. M
  14. N
  15. O
  16. P
  17. Q
  18. R
  19. S
  20. T
  21. U
  22. V
  23. W
  24. X
  25. Y
  26. Z
  27. #