2nd request! MSUD Y438N allele testing - please complete this survey if you follow patients with MSUD!

Please do not send emails to this address!!!!1

 

Linda Brittingham

Section Manager

Section of Medical Genetics and Molecular Medicine

Children's Mercy Hospitals and Clinics

2401 Gillham Road

Kansas City, MO  64108

Phone: 816-234-3709

[log in to unmask]

-----Original Message-----
From: Communication for the Heartland Regional Genetics Group [mailto:[log in to unmask]] On Behalf Of Peck, Dawn
Sent: Friday,
April 04, 2008 3:09 PM
To: [log in to unmask]
Subject: 2nd request! MSUD Y438N allele testing - please complete this survey if you follow patients with MSUD!

 

Dear all –

Yes I know it’s Friday, but please, if you haven’t gotten a chance to complete the really short survey about your need for Free MSUD testing, please do!  I’ve only had one response so far and I know that there is more than one patient out there!  It is really short and will only take you a minute or two.

http://www.surveymonkey.com/s.aspx?sm=mkgb9ZCOfO03pwxCz00kqQ_3d_3d

As a reminder….

Last year, research based testing for the Y438N E1 allele common in Mennonite patients with MSUD was funded by the Heartland Regional Genetics Collaborative (http://www.heartlandcollaborative.org/projects0708.asp#maple_syrup). A letter announcing the availability of this testing for all of your MSUD patients (both Mennonite and non-Mennonite) was sent to your centers.  If you follow any patients with MSUD, we are asking that you complete this short survey to identify the need for this testing among the Heartland States. This testing has a very fast turn around time (5 hours!) and has already been used to test numerous Missouri infants at risk for MSUD with results faster than newborn screening alone.

http://www.surveymonkey.com/s.aspx?sm=mkgb9ZCOfO03pwxCz00kqQ_3d_3d

If you have any questions about this testing, or would like additional information, please do not hesitate to contact myself at [log in to unmask] or Dr. Charlotte Phillips @ [log in to unmask].

Thank you!

Dawn

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Dawn Peck, MS, CGC

Genetic Counselor

University of Missouri Health Care

One Hospital Drive, DC058.00

Columbia, MO  65212

(573) 884-5192 - phone

(573) 884-3543 - fax

(573) 882-4141 - to page