Hi,

The Breast Cancer IRB is approved.  I will be sending the honest brokers 
individual emails containing the de-identified patient lists in a randomized 
order for your institution.  Although this is de-identified patient 
information, I will treat it as identified and send the files through 
securefiles.kumc.edu.  You will receive an email with a download link.  Upon 
clicking the link, you will be prompted to verify your email and create a 
password.  At that point, the file will be available for download.  Here are 
the steps to follow upon receipt of the list.

Steps to Follow after Receiving List of Eligible Subjects

1.       List will include an "Order ID number" and the de-identified patient 
number for each patient (ideally also encounter number designating the tumor of 
interest)

2.       Sites will create a mailing list containing contact information and 
the Order ID number.

3.       Sites will verify

?  that cases were females with their first breast cancer diagnosis between the 
real dates of 5/1/2013-5/1/2014 (except UI, UNMC, and UTHSC-SA where 
ascertainment window is 1/1/2013-5/1/2014)

?  valid name and address (some sites will be able to access the US Postal 
Service database, others will not)

4.       Exclude patients from mailing list if:  invalid/missing name or 
address or who are not women first diagnosed with breast cancer during the 
period of interest.

5.       Notify UI Coordinating Center 
([email protected]<mailto:[email protected]>) when the 
verified mailing list is ready.

6.       UI Coordinating Center will then provide a range of Study ID numbers 
for the sites to use.

7.       Sites will add Study ID numbers to the Mailing List until they run out 
of Study ID numbers to assign.  The assignment must proceed as follows:

?  Sort the Mailing List in ascending order by Order ID number. This is very 
important because the order has been randomly assigned and the Order ID number 
must be followed to preserve that random sampling.

?  Assign one Study ID number from the available range of Study ID numbers to 
each record in the Mailing List, beginning with the smallest Order ID number 
and proceeding until the full range of Study ID numbers have been assigned. 
Note that larger sites may have a substantial number of patients for whom a 
Study ID number is not assigned.

?  Verify that each Study ID number has been assigned to only one Order ID 
number on the mailing list.
Persons on the Mailing List to whom a Study ID number has not been assigned 
will be reserved at the site for replacement, for example if a survey is 
returned and a forwarding address cannot be identified or because a person is 
now deceased.

For reference, I've attached the 1 page Breast Cancer update discussed by Dr. 
Chrischilles at the May 7 GPC-All call.

Regards,
Tamara McMahon
Division of Medical Informatics
University of Kansas Medical Center
913-945-7470
Request a training or consultation<https://redcap.kumc.edu/surveys/?s=qYxMmb>

Attachment: Breast Cancer Study Update 7 May 2015.docx
Description: Breast Cancer Study Update 7 May 2015.docx

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