Genomics

Events

Banking Newborn Blood Spots for Public Health

September 23-24, 2002
Atlanta, GA

Agenda

Monday, September 23, 2002
	Beginning Session	Presenter
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 Partners What 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 Issues Data 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 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 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 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 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

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