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Banking Newborn Blood Spots for Public Health

September 23-24, 2002
Atlanta, GA

Time

 Beginning Session Presenter

Agenda Monday, September 23, 2002
8:30 a.m. CDC Welcome and Introductions
Muin Khoury
8:35 a.m. Meeting Objectives and Importance of Population-Based Data for Public Health Decision Making
Mary Lou Lindegren
Richard Olney
8:45 a.m. Overview of Storage and Use of Newborn Screening Specimens
Kenneth Pass
9:00 a.m. Overview of Uses, Methods, Technology, Challenges of Newborn Blood Spot BioBank, The Danish Example
Bent Norgaard-Pedersen
9:30 a.m. Break
SESSION I. PUBLIC HEALTH APPLICATIONS AND FUTURE USES AND DIRECTIONS
Moderators: Karen Edwards, Washington; Diana Schendel, CDC
9:45 a.m. Uses of Banked DNA Bloodspots to Assess the Genetic Health of New York State
Michele Caggana
10:00 a.m. Massachusetts Model Using HIV Seroprevalence and MCAD as Examples Anne Comeau
10:15 a.m. Uses of Linked Spot Bank to Study Markers of Birth Defects and Other Developmental Disabilities
Gary Shaw/Fred Lorey
10:30 a.m. Diabetes Study in Washington State Michael Glass
10:45 a.m. MeningococcalStudy
Jai Lingappa
11:00 a.m. Panel and Group Discussion
State Health Departments: Public Health Resource Stewards and Research PartnersWhat are potential important public health research issues that could be
addressed using population-based stored dried-blood spots?
  • Newborn Screening
  • Child Health
  • New Technology Assessment
  • Others
12:15 noon Lunch
SESSION II. TECHNOLOGY ISSUES
Moderators: Kenneth Pass, New York; Pam Costa, CDC
1:00 p.m.
Laboratory Issues

DNA based Technology Using Dried Blood Spots
Michele Caggana
New Applications: Using Dried Blood Spots in Research Studies, QC
Joanne Mei
Storage Issues
David Boyer
1:30 p.m. Group Discussion
1:45 p.m. Database IssuesData Collected Through NBS
Brad Therrell
Linkages of Databases
Pam Costa
Cataloguing/Retrieval Systems
Richard Frome
2:15 p.m. Group Discussion
SESSION III. MODEL APPROACHES AND METHODS/STATE ISSUES
Moderators: Anne Comeau, Massachusetts; Omar Henderson, CDC
2:30 p.m. Overview of Potential Strawman Models for Discussion
Key Elements of Different Alternatives and Strengths and Weaknesses
A. Anonymous Banks
B. Linked Banks
2:45 p.m. State and Group Discussion
State Health Departments: Public Health Resource Stewards and Research Partners
State Health Department Comments addressing issues below – CA, GA, MA, MI, MN, NC, NY, RI, SC, TX, WA
  1. What are the highest priority uses? How should research priorities be set? How should access and collaboration be determined?
    • Determining program needs
    • Balancing state, regional, and national priorities
    • Balancing public health and academic research interests
    • Evaluating cost-effectiveness
    • Maintaining sophisticated staff and state ownership issues
  2. How can meaningful collaborations be established and maintained?
    • State public health laboratory and other public health programs
    • Public health / academia / industry
    • State / federal public health agencies
  3. For each model, what are key laboratory and data technical issues? What are key administrative issues? How should they be addressed?
    • Specimen handling, storage, and retrieval
    • Laboratory technology
    • Database management and linkages
    • Controlling access to specimens and data
    • Resources
    • Quality control
  4. For each model, what are ethical, legal and social issues? How should they be addressed?
    • Consent for storage and testing
    • Legal authority for access to specimens and data
    • Confidentiality and privacy issues
    • Community participation in research planning
    • Communication of results
    • IRB
    • Impact of HIPPA
3:30 p.m. Break
3:45-5:10 p.m. Continued Group Discussion: Outline Challenges and Barriers and Key Elements of Several Alternatives for Model Anonymous and Linked Banks
Anne Comeau
5:05 p.m. Summarize Discussion
5:45 p.m. Van to hotel
Tuesday, Septermber 24, 2002
SESSION IV. SUMMARY FROM DAY ONE
Moderators: Fred Lorey, California; Mary Lou Lindegren, CDC
Overview of issues discussed day one to facilitate discussion of next steps
for Strategic Plan (5-10 minutes each)
8:30 a.m. Public Health Application and Uses
Karen Edwards
Technical Issues
Roger Eaton
Strengths, Weaknesses, Challenges for Anonymous Models
Mark McCann
Strengths, Weaknesses, Challenges for Linked Models
Paul Fernhoff
Feasibility Issues
Harold Dowda
9:20-10:15 a.m Group Discussion
10:15 a.m Break
SESSION V. NEXT STEPS FOR STRATEGIC PLAN
Moderators: George Cunningham, California, Harry Hannon, CDC
10:30 a.m. Update from on NBS Informed Consent Meeting
George Cunningham
Michele Puryear
10:45 a.m. Updating Storage and Retention Policies for Publication
Richard Olney
10:10 a.m.

APHL Update
Jelili Ojodu
11:10-1:00 p.m. Group Discussion of Next Steps for Implementation Steps
  • What types of pilot implementation projects are needed?
  • What additional information, experience, gaps could be addressed?
  • What collaborations are needed?
  • What additional input is needed, such as larger stakeholder meeting, advisory committees in state, and additional input on technology issues?
  • Follow-up on ethical, legal and consent issues.
  • Identify potential users
  • Seek input and determine a process for access and collaboration
  • Resource needs
  • A summary of this planning meeting could serve as a white paper or journal article

Charge:
to provide input and key challenges to the California Informed Consent Meeting
1:15 p.m. Summarize Next Steps
Harry Hannon
1:45 Adjourn