PMID- 17605799 OWN - NLM STAT- PubMed-not-MEDLINE DCOM- 20070813 LR - 20240414 IS - 1742-5573 (Electronic) IS - 1742-5573 (Linking) VI - 4 DP - 2007 Jul 2 TI - Mortality ascertainment of participants in the National Wilms Tumor Study using the National Death Index: comparison of active and passive follow-up results. PG - 5 AB - Long term studies of childhood cancer survivors are hampered by difficulties in tracking young adult participants. After performing a National Death Index (NDI) search we sought to identify which factors best predicted a match among known decedents from the National Wilms Tumor Study (NWTS) and to determine if record linkage could substitute for missing follow-up in a cohort of NWTS survivors. To our knowledge, this is the first study to compare passive mortality follow-up using the NDI to active follow-up of a childhood and young adult population. Records for 984 known decedents and 3,406 subjects whose January 1, 2002 vital status was unknown were sent to the NDI in June 2003. In April 2005 NWTS follow-up records were used to reassess January 1, 2002 vital status. Matches were established for 709 of 789 known decedents (sensitivity 89.9%) with a date of death between 1979 and 2001, the calendar period covered by the NDI at the time of the search. No matches were identified among 1,052 subjects known to be alive in 2002 (specificity 100%). Factors associated with decreased sensitivity were an unknown social security number (sensitivity 87.8%), Hispanic ethnicity (76.4%) and foreign birth (56.5%). For 2,351 subjects with 2002 vital status unknown who had 13,166 pre 2002 person-years of missing observation, only 18 deaths were ascertained by the NDI whereas 79.3 were expected based on NWTS mortality data. Mortality analyses based strictly on NDI search results and those based on NWTS follow-up augmented with NDI search results yielded inflated estimates of the 15 year survival rate when compared with estimates based on NWTS active follow-up. Match rates were comparable to those observed in adult populations. Since the same selection factors were likely associated with NDI failure to match and NWTS loss to follow-up, use of the NDI to fill in missing follow-up data appears unwarranted. FAU - Cotton, Cecilia A AU - Cotton CA AD - Department of Biostatistics, University of Washington, Box 357232, Seattle, WA 98195, USA. ccotton@u.washington.edu FAU - Peterson, Susan AU - Peterson S FAU - Norkool, Patricia A AU - Norkool PA FAU - Breslow, Norman E AU - Breslow NE LA - eng GR - R01 CA054498/CA/NCI NIH HHS/United States PT - Journal Article DEP - 20070702 PL - England TA - Epidemiol Perspect Innov JT - Epidemiologic perspectives & innovations : EP+I JID - 101231646 PMC - PMC1934904 EDAT- 2007/07/04 09:00 MHDA- 2007/07/04 09:01 PMCR- 2007/07/02 CRDT- 2007/07/04 09:00 PHST- 2006/09/29 00:00 [received] PHST- 2007/07/02 00:00 [accepted] PHST- 2007/07/04 09:00 [pubmed] PHST- 2007/07/04 09:01 [medline] PHST- 2007/07/04 09:00 [entrez] PHST- 2007/07/02 00:00 [pmc-release] AID - 1742-5573-4-5 [pii] AID - 10.1186/1742-5573-4-5 [doi] PST - epublish SO - Epidemiol Perspect Innov. 2007 Jul 2;4:5. doi: 10.1186/1742-5573-4-5.