1 Normalized Curation 12 March 2009

Agenda 1/12 Agenda Foundation of normalized curation Normalized curation Pros and cons of normalized curation

Foundation of Normalized Curation 1/103 What is Normalized Curation? Normalized curation is a caDSR recommended technique used to minimize the number of CDEs needed for list or tabular data. CDEs are used to represent the data columns rather than the rows.

Foundation of Normalized Curation 2/104 Normalized Curation is Based on Existing Curation Techniques Multiples 1 database field mapping to multiple CDEs

Foundation of Normalized Curation 3/105 Multiples Form 2900 Question 4

Foundation of Normalized Curation 4/106 Multiples Illustration of the mapping FormsNetcaDSR cod_contrib cod_specify Contributing Cause of Death Type Contributing Cause of Death Specify

Foundation of Normalized Curation 5/107 Multiples Form Builder Report

Foundation of Normalized Curation 6/108 Multiples Translation of sample data FormsNetcaDSR cod_contrib = other infection cod_specify = viral infection 2 Contributing Cause of Death Type = other infection Contributing Cause of Death Specify = viral infection 2 Repeat sequence # Repeat sequence # 1 Contributing Cause of Death Type = accidental death 1 cod_contrib = accidental death 3 Contributing Cause of Death Type = other organ failure Contributing Cause of Death Specify = renal failure cod_contrib = other organ failure cod_specify = renal failure 3

Foundation of Normalized Curation 7/109 1 FN Field Maps to 2 CDEs Form 2400 Questions 34 & 35

Foundation of Normalized Curation 8/ FN Field Maps to 2 CDEs Illustration of the mapping FormsNetcaDSR karn_lan_cde Karnofsky Performance Status Score karn_ln_score Status Functional Scale Type Lansky Performance Status Score karn_lan_cde

Foundation of Normalized Curation 9/ FN Field Maps to 2 CDEs Form Builder Report

Foundation of Normalized Curation 10/ FN Field Maps to 2 CDEs Translation of sample data FormsNetcaDSR karn_lan_cde = karnofsky Karnofsky Performance Status Score = 80karn_ln_score = 80 Status Functional Scale Type = karnofsky Patient 1 karn_lan_cde = lansky Lansky Performance Status Score = 60karn_ln_score = 60 Patient 2 Status Functional Scale Type = lansky

Normalized Curation 1/813 Normalized Curation Example Form 2400 Questions

Normalized Curation 2/814 Normalized Curation Example Non-Normalized Curation Wegener Granulomatosis Pulmonary Involvement Indicator –Permissible Values: Yes, No Wegener Granulomatosis Pulmonary Involvement Primary Transplantation Reason Indicator –Permissible Values: Yes, No Wegner Granulomatosis Renal Involvement Indicator –Permissible Values: Yes, No Wegner Granulomatosis Renal Involvement Primary Transplantation Reason Indicator –Permissible Values: Yes, No

Normalized Curation 3/815 Normalized Curation Example Form 2400 Questions

Normalized Curation 4/816 Normalized Curation Example Normalized Curation Wegener Granulomatosis Involvement Type –Permissible Values: Upper respiratory tract, pulmonary, renal etc. Wegener Granulomatosis Involvement Occurrence Indicator –Permissible Values: Yes, No Wegener Granulomatosis Involvement Primary Transplantation Reason Indicator –Permissible Values: Yes, No Wegener Granulomatosis Involvement Specify –Free Text

Normalized Curation 5/817 Normalized Curation Example Illustration of the mapping caDSRFormsNet Wegener Granulomatosis Involvement Type Wegener Granulomatosis Involvement Occurrence Indicator pre_ted_wg_up_rsp_yn pre_ted_wg_pulm_yn pre_ted_wg_renal_yn pre_ted_wg_renal_type Wegener Granulomatosis Involvement Type Wegener Granulomatosis Involvement Specify Etc. pre_ted_wg_other_spec

Normalized Curation 6/818 Normalized Curation Example Form Builder Report

Normalized Curation 7/819 Normalized Curation Example Form 2400 Questions

Normalized Curation 8/820 Normalized Curation Example Translation of sample data FormsNet pre_ted_wg_other_yn = yes 2 caDSR W G Involvement Type = other WG Involvement Occurrence = yes 2 Repeat sequence # Repeat sequence # WG Involvement Transplantation = yes pre_ted_wg_other_hsct_yn = yes pre_ted_wg_other_spec= cardiac WG Involvement Specify = cardiac pre_ted_wg_skin_yn= no 1 W G Involvement Type = skin WG Involvement Occurrence = no 1

Pros and Cons of Normalized Curation 1/221 Pros and Cons of Normalized Curation Pros –More generic CDEs have greater reuse potential –Fewer CDEs are created –Easier to aggregate data Cons –AGNIS captures data differently than FormsNet –Legacy systems may make normalized translations difficult –Not all tabular or list data can be normalized

Pros and Cons of Normalized Curation 2/222 Not All Tabular / List Data Can Be Normalized Forms 2006: 61-70, 2100: , 2200: , 2300: