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Description

The Center for International Blood and Marrow Transplant Research (CIBMTR) brings together the expertise and unique resources of two leaders in the field of blood and marrow transplant research: the National Marrow Donor Program (NMDP) and the Medical College of Wisconsin's International Bone Marrow Transplant Registry and Autologous Blood and Marrow Transplant Registry. The Center designs, conducts, and supports clinical studies that involve large numbers of patients from multiple transplant centers.

CIBMTR has been awarded responsibility for managing standard outcomes datasets required by the Health Resources and Services Administration (HRSA) for the Stem Cell Therapeutic Outcomes Database (SCTOD). This database is one component of a system of applications that facilitate collection, validation, analysis, and reporting of information related to blood and marrow transplant research.  The CIBMTR paper entry forms have been created in the FormsNet application where users can enter patient information. Information can also be registered into FormsNet from local applications or commercial tools. AGNIS (A Growable Network Information System) accepts electronic submissions and converts the input into a format for registration in FormsNet. SCTOD extracts the data and performs aggregation and formatting for mandatory reporting. Clear identification of the data is a requirement for this process to flow correctly. Well defined metadata for the data elements used is a key component in this identification process.

The NMDP staff is currently looking at the data collection forms and documenting them with well formed, semantically annotated, and defined caDSR data elements and permissible values. There are 98 forms and approximately 8,000 data elements recorded in FormsNet To speed up the process, NMDP is working with curators from NCI Center for Biomedical Informatics and Information Technology (CBIIT). NCI CBIIT will review the forms for concepts to determine which concepts currently exist and which ones need to be created.  After this is done, the NMDP team will decompose the form - deciding what CDEs are to be created, what concepts to use, and the structure of the value domains. NCI CBIIT will then do the curation and NMDP will do the QA.

Team Members

The team is made up members from CIBMTR, NMDP, and NCI CBIIT.

Members

Organization

Email

Robinette Aley

NMDP

raley@nmdp.org

Betty Lee

SAIC, NCI CBIIT contractor

betty.c.lee@saic.com

Mary Cooper

SAIC, NCI CBIIT contractor

coopermj@saic.com

Tommie Curtis

SAIC, NCI CBIIT contractor

curtist@saic.com

Suzette Czech

CIBMTR

sczech@nmdp.org

Jocelyn Leatherwood

SAIC, NCI CBIIT contractor

jocelyn.a.leatherwood@saic.com

Michele Nych

CIBMTR

mnych@nmdp.org

Dianne Reeves

NCI CBIIT

reevesd@mail.nih.gov

Wendy Zhang

CIBMTR

wzhang@mcw.edu

Lorenzo Scott

CIBMTR

lscott@mcw.edu

Angela Kummerow

CIBMTR

kummerow@hughes.net

Working Documents

Meetings (2008 to 2009 Project)

NMDP/CIBMTR/NCI CBIIT Teleconference Information

When: First and third Tuesdays of  each month 3-4 p.m. EDT
Phone: 1-866-730-9503
Passcode: 3197
Web:

http://ncicb.centra.com/

Meeting ID: Curate

NMDP/CIBMTR Teleconference Information

When: Every Thursday 10-11 a.m CDT
Phone: 866-730-9503
Passcode: 5577

NMDP/CIBMTR Meeting Notes

Documentation

Forms and FormsNet References

 

 

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