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Promoting Quality Laboratory Testing for Rare Diseases:
Keys to Ensuring Quality Genetic Testing
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May 20-21, 2004 |
Atlanta, GA |
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Presentations |
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Bin Chen, PhD; Andy Faucett, MS |
Overview of Laboratory Testing for Rare Diseases |
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Virginia Wanamaker, BS, MT(ASCP) |
CLIA Oversight for Rare Disease Testing |
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Glen Drew, JD |
IRB Issues in Releasing Individual Test Results in Clinical Research |
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Myra Moran, JD |
HIPAA Privacy Rule and Rare Disease Clinical Research |
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Michael Watson, PhD |
Rare Genetic Diseases: Former SACGT Workgroup and the NIH-DOE Task Force on Genetic Testing |
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William Gahl, MD. PhD |
Clinicians' Perspective and Needs for Rare Disease Laboratory Testing |
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Michele Puryear, MD. PhD |
Newborn Screening Systems: A Model for Translating Science into Practice |
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David Ledbetter, PhD |
Proposed Partnership between Research and CLIA-certified Laboratories |
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Patricia Charache, PhD |
The Johns Hopkins University Experience |
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Soma Das, PhD |
Rare Orphan Genetic Disease Diagnosis - The University of Chicago Experience |
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Sherri Bale, PhD |
The GeneDx Experience |
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Michele Caggana, ScD |
The Genetic Testing Quality Assurance Program in New York State |
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Peter Ray, PhD |
The Hospital of Sick Children Experience |
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Giovanna Spinella, MD |
Office of Rare Diseases Experience in Rare Disease Gene Testing |
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Janet Whitley, PhD |
The Office of Orphan Products Development Grant Program |
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Elizabeth Mansfield, PhD |
Humanitarian Device Exemptions (HDE) and Investigational Device Exemptions (IDE) Programs |
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Sharon Terry, MA |
Development of a Genetic test for Pseudoxanthoma Elasticum (PXE): Patients' Role in Research Translation |
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Morris Mellion, MD; Margaret Piper, PhD, MPH |
Genetic Testing for Rare Diseases: A Payer Perspective |
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<< Outcomes
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Table of Contents >>
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This page last reviewed: 09/14/2004
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