Finding the Transplant Data You Need

1
Finding the TransplantData You Need

• Wednesday, June 6, 2007
• Los Angeles, CA

2
Objectives

• Describe What Transplant Data Are Available
• Demonstrate How to Get It

3
Where to Find Transplant Data

• OPTN Website
• Data Tables and Build a Report
• Submit Data Request
• Request a STAR File
• UNetSM Reports
• Tiedi Reports
• Waiting List Reports
• National Dashboard
• Other Transplant Data Resources

4
OPTN Website

• www.OPTN.org
• Click on Data Tab, View Data Reports
• Current US Waiting List, Transplant and Donor
  Numbers
• Updated Weekly with Recent Data
• National, Regional, State (of program),
  Center/DSA Level Data Available
• Submit Data Request

5
Demonstration
6
Data Requests and STAR Files

• Data Request http//www.optn.org/data/request_mai
  n.asp or through UNetSM
• Most Requests Filled in 2 Weeks
• Standard Reports
• Programming Requests
• STAR Files
• 250/mo, more during peak periods

7
STAR Files

• Allow You to Perform Your Own Statistical
  Analyses
• Hundreds of Data Elements, Thousands of Records
• Transplant STAR File (Includes Follow-up)
• Waiting List STAR File (TX file, plus Data for WL
  Candidates Not Transplanted)
• Data Formats for Coded Variables
• Detailed Documentation in Excel

8
STAR Files

• Includes All U.S. Transplants Since 10/1/1987
• Must Have SAS/S/SPSS/Stata (Large file size, NOT
  Excel/Access)
• No Center IDs / Patient IDs Encrypted
• Must Sign and Fax Data Use Agreement
• FREE to OPTN Members

9
What Data Are Collected?

• Waiting List Data
• UNetSM Forms
• TCR-Transplant Candidate Registration
• TRR-Transplant Recipient Registration
• TRF-Transplant Recipient Follow-up
• PTM-Post-Transplant Malignancy
• DDR-Deceased Donor Registration
• LDR-Living Donor Registration
• LDF-Living Donor Follow-up
• RH/DH-Recipient and Donor Histocompatibilty
• Click on About Data, Data Collection on Left
  Side

10
Finding Data Forms
11
Other OPTN Web Resources

• Data Resources http//www.optn.org/data/data_resou
  rces.asp
• Slides Presented At Regional Meetings
• Govt Resources http//www.optn.org/resources/gove
  rnmentResources.asp
• Progress Towards HHS Program Goals

12
UNETSM / Secure Enterprise
13
UNetSM Resources Tiedi Reports

• Compliance Report
• Center Specific Transplant Data
• Living Donor Confirmation
• Death Reports
• Transplant Data Confirmation
• Deceased Donor Confirmation
• OPO Report
• Discrepant HLA Typings

14
UNETSM TIEDI Basic Information
15
UNetSM Resources Waiting List Reports

• Active Multiple Listed Candidates
• Blood Group Totals Report
• Candidate Report
• Candidates Pending Downgrade/Downgraded Report
• Heart Status Time Report
• Individual Candidate Report
• Lab Report (ABO, antigens, mm acceptance
  criteria, PRA)

16
UNetSM Resources Waiting List Reports

• Liver Candidate MELD/PELD Report
• Liver Status Time Report
• Liver/Intestine Report
• Lung Allocation Score Missing/Expired Data
  Report
• MELD/PELD Exception
• Organ Specific Candidate Report
• Reported Multiple Listed Candidate Removals
• Unacceptable Antigen Cross Reference Table
• Vessel Use Report

17
UNetSM Resources Waiting List Reports
18
UNetSM Resources Waiting List Reports

• Can Create Customized Reports
• Start with Standard report
• Wrench Icon can customize to get just data
  elements you want!
• Print or Export Results

19
Custom UNetSM Waiting List Reports
20
UNetSM Resources National DSA Dashboard

• Now posted in UNETSM (DSA Data Reports) rather
  than mailed
• Updated Quarterly
• Includes DSA Specific Measures of Progress
  Towards Collaborative Goals

21
Demonstration
22
USTRANSPLANT.ORG (SRTR)

• Two Contracts, SRTR Designated to Produce
  Center-Specific Outcomes Reports
• Updated Twice a Year
• Both Center and DSA Outcomes Measures
• Both Post- (Survival) and Pre-Transplant (WL
  Mortality/Waiting Times) Measures

23
Demonstration
24
Need Help?

• http//www.optn.org/data/request_main.asp
• https//portal.unos.org/help/secure_enterprise/Sec
  ure_Enterprise.htm
• On-line Tutorials
• Onsite sign up for customized training classes
• Online access training tutorials or online help
  anytime
• For more information, contact techimplementation_at_u
  nos.org

25
Questions??
26
Questions To Run On

• What excites you the most about the
• speakers presentation?
• Name one thing you can bring back to your center
  as a result of this talk?