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Universal Data Collection (UDC) Project Timeline

1996
UDC Working Group “Data Committee” formed

1998
UDC begins
Do the 5 Campaign initiated by NHF
Enrollment reaches 1,400

1999
Enrollment reaches 5,400

2000
Enrollment reaches 8,300

2001
Enrollment reaches 10,200

2002
Parvovirus B19 testing of specimens from children
Normal ROM study initiated
Enrollment reaches 12,300

2003
Electronic data submission begins
West Nile Virus testing of ’02 specimens
Data forms for children less than 2 years old piloted (Baby UDC)
Enrollment reaches 14,100 (including 39 babies)

2004
UDC mapping projects initiated
Baby UDC introduced
BMI identified as risk factor for joint disease
Enrollment reaches 15,800 (including 110 babies)

2005
Female UDC working group formed
Research proposals from HTC investigators formally invited
West Nile Virus testing of ‘03 specimens
Quality of Life forms introduced
Inhibitor Surveillance Pilot project begins
Labtracker adapted as national data collection tool
Data summit held to discuss national database
Enrollment reaches 17,600 (including 300 babies)

2006
Formation of UDC Coordinating Committee
American Thrombosis Hemostasis Network (ATHN) established to provide stewardship of a secure national database to be housed at CDC
Enrollment reaches 19,400 (including 524 babies)

2007
Certificate of Confidentiality obtained for UDC
Formation of Rare Bleeding Disorders working group
Three new baby sites added to Inhibitor Surveillance Pilot project
Enrollment reaches 20,900 (including 697 babies)

2008
Female UDC data form piloted

Enrollment reaches 21,300 (including 760 babies) and counting . . .

 

Reproductive Issues in Women with Bleeding Disorders. January 22, 2014 2-3PM EST. Save the Date. Click here for more info.

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