2. Jennifer Ruhl, BBA, RHIT, CTR Public Health Analyst NCI SEER An innovative approach to improve the quality of data collection for hematopoietic diseases

3. Overview Current state of Hematopoietic disease collection Problems identified Hematopoietic Work Group Hematopoietic Database

4. Current State of Hematopoietic Data Collection Only one disease is collected No consistency as to which phase is collected Unable to determine how many diseases transform

5. Problems Identified Guidelines for collecting hematopoietic diseases outdated Information available not easily understood nor uniformly used Complete treatment and survival information not being captured

6. Hematopoietic Work Group

7. Members NCI SEER ACoS CoC CDC/NPCR CCR NAACCR NCRA 4 physicians Hospital registrars Central registrars Independent consultants Ad hoc advisors

8. Process Bi-monthly meetings Database and development Populating the database Rules development Rules revision

9. Purpose of Work Group Assess registrars’ needs Improve case-finding Improve coding Improve documentation

10. Process of Data Collection Review of SINQ questions Draft of multiple primary rules developed by NCI SEER staff Committee review of rules Consultation with Ad Hoc consultants Revisions and second reviews

11. Hematopoietic Database

12. Database Development Consultants collected information on all the hematopoietic diseases Physicians reviewed and added additional information Committee review

13. Basic Information Available for download from the SEER website Updated annually to keep current with medical technology Links to SEER Rx

14. Contents of Database Definition of disease Immunophenotyping Genetics data Definitive diagnostic method Alternate names Benign precursors Treatment Transformations

15. The front page of the Hematopoietic database

16. Locating a disease

17. Specific disease information

18. Additional Features Mapping to other coding systems “Did you know” Bells and whistles

19. Beta Testing Mini reliability study on new rules Hematopoietic database distributed to working group members

20. Distribution Rules and database to be effective for cases diagnosed January 1, 2010 and forward Rules and database to be distributed in later part of 2009.

21. Education and Training State and Regional workshops NCRA 2009 and 2010 NAACCR 2009 and 2010

22. Questions