1. Six reference laboratories (the Emory University Molecular Genetics Laboratory, the Baylor Medical College Molecular Genetics Laboratory, the University of Chicago Molecular Genetics Laboratory, GeneDx, the UCLA Rare Disease Testing Laboratory, and the Hospital of Sick Children Molecular Diagnostic Laboratory) expressed interest in the proposed network approach and became initial members of a North American Rare Disease Laboratory Network.
2. ASHG will organize educational workshops for members to promote understanding of CLIA requirements and other quality issues in the rare disease research-clinical interphase, and is poised to develop a policy statement to address issues related to releasing individual-specific genetic test results in clinical research studies.
3. OHRP is committed to providing education to IRBs regarding CLIA certification and their role in safeguarding the release of individual test results in clinical research. Initial activities will include discussion among IRBs through the OHRP listserv, invited presentations on CLIA, and focused workshop at the IRB annual meetings.
4. A follow-up conference is needed to convert recommendations developed into projects and action items, and develop further recommendations for issues that need to be further addressed.

Participants expressed appreciation for conference organizers, particularly CDC, NIH ORD, and Emory University, for organizing and supporting the conference. It was suggested that the presentations, breakout group reports, and the conference summary be posted on the CDC website to make the information and recommendations available to the public and to help obtain additional input for moving the process forward. The follow-up conference, proposed to be the "Integration Conference", will be held in 6 months in Washington, DC.