What is LTFU
-----Original Message-----
From: Communication for the Heartland Regional Genetics Group
[mailto:[log in to unmask]] On Behalf Of Williamson, Lori L. (HSC)
Sent: Thursday, October 19, 2006 5:22 PM
To: [log in to unmask]
Subject: conference calls on Monday 10/23
Heartlanders:
The RCC has organized three 1-hour conf calls, each on a different subject,
for Monday morning (10/23). Council and collaborative members with specific
expertise have been notified of these calls. However, this is an open
process. Any Heartlander can join the call. The purpose of these calls is
to discuss Heartland's response to HRSA's supplement.
Dr. Mulvihill and I travel to Rockville on WED (10/25) and expect the
guidance will be available at that time. We'd like to have some reasonable
ideas generated before then for 3 reasons: 1) we can go into the meeting w/
ideas and amend the ideas as needed based on what we hear; 2) having ideas
ahead of time will help us find ways to collaborate with another region or
state; and 3) there will be a very short TAT for submission further
complicated by the holidays-so we want to have some ideas in the queue.
The three topics are:
8:15 LTFU and clinical database/registry
9:00 Lab QA
10:30 Harmonizing nbs testing panels
If you wish to participate on the call, please e-mail the regional
coordinating center: [log in to unmask] as we will need to request more ports for
the call.
Sincerely,
Lori Williamson, MS, CGC
Genetic Counselor
Assistant Professor, Pediatrics
University of OK Health Sciences Center
Phone: 405-271-8685
Fax: 405-271-8697
Address:
OU Children's Hospital
940 NE 13th St., Rm B2418
Oklahoma City, OK 73104
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