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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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