96-31325. Announcement of Workshop

[Federal Register Volume 61, Number 238 (Tuesday, December 10, 1996)]
[Notices]
[Page 65066]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 96-31325]


-----------------------------------------------------------------------

DEPARTMENT OF HEALTH AND HUMAN SERVICES
Centers for Disease Control and Prevention


Announcement of Workshop

    The National Center for Environmental Health (NCEH) of the Centers 
for Disease Control and Prevention (CDC), the National Institutes of 
Health (NIH), the Cystic Fibrosis Foundation, and the University of 
Washington announce the following workshop.

    Name: Newborn Screening for Cystic Fibrosis: A Paradigm for 
Public Health Genetics Policy Development.
    Times and Dates: 8 a.m.-5:30 p.m., January 13, 1997. 8 a.m.-4 
p.m., January 14, 1997.
    Place: CDC, Auditorium B, 1600 Clifton Road, NE, Atlanta, 
Georgia 30333.
    Status: Open to the public, limited only by the space available.
    Purpose: The Workshop will enable academic and public health 
professionals to discuss and clarify issues and to provide 
individual input to develop guidance on population-based newborn 
screening for cystic fibrosis. This workshop will bring together 
leaders from the fields of cystic fibrosis research, clinical 
practice, public health, and newborn screening for an updated 
discussion of the benefits and risks of newborn screening for cystic 
fibrosis. Nationally, a wide range of newborn screening tests are 
now widely accepted and used. Since the immunotrypsinogen test for 
cystic fibrosis has been available, experts have been discussing 
adding this test to the newborn screening panel. Previous 
symposiums, held in 1983 and 1991, concluded that routine newborn 
screening for cystic fibrosis should not be more widely implemented 
until newborn diagnosis has been demonstrated to lead to significant 
clinical benefits. Recently, the discovery of the Cystic Fibrosis 
Transmitbrain Conductive Regulator (CFTR) gene renewed interest in 
this possibility, as the sensitivity and specificity of testing 
could be improved. Since cystic fibrosis is a genetic disease of 
public health importance, public awareness of cystic fibrosis is 
generating increased interest in health policies related to newborn 
screening.
    Matters to be discussed: The Workshop will include sessions on 
the following: (1) decision making in newborn screening for Cystic 
Fibrosis (CF), (2) laboratory considerations in newborn screening 
for CF, (3) progress in newborn screening and interventions for CF, 
(4) ethics and health policy of newborn screening for CF, (5) update 
on international newborn screening programs, followed by break-out 
group discussions and final conclusions.
    Agenda items are subject to change as priorities dictate.
    For Further Information Contact: Dwight Jones, Division of Birth 
Defects and Developmental Disabilities, NCEH, CDC, 4770 Buford 
Highway, NE, Atlanta, Georgia, 30341, telephone [phone], FAX 
770/488-7197. Registration is not required. A limited number of 
hotel rooms are reserved for the ``Cystic Fibrosis Workshop'' until 
December 20, 1996, at the Emory Inn, 1634 Clifton Road, Atlanta, 
Georgia 30333, telephone [phone].

    Dated: December 4, 1996.
Nancy C. Hirsch,
Acting Director, Management Analysis and Services Office, Centers for 
Disease Control and Prevention (CDC).
[FR Doc. 96-31325 Filed 12-9-96; 8:45 am]
BILLING CODE 4163-18-M