Sample Design Methodology for Studying Patients Using Registry Data

• Activity Number: 314
• Type: Contributed
• Date/Time: Tuesday, August 3, 2010 : 8:30 AM to 10:20 AM
• Sponsor: Section on Survey Research Methods
• Author(s): Shelton M. Jones*+ and Lauren A. McCormack and Timothy Patrick Johnson and Connie L. Hobbs and Joseph P. McMichael and Steven B. Clauser
• Companies: RTI International and RTI International and Survey Research Laboratory and RTI International and RTI International and National Cancer Institute
• Keywords: sampling patients ; disease registry sampling ; multimode data collection ; alternative sampling

Abstract

Since approval of the Cancer Registries Amendment Act in 1992, states have continued to improve the construction of databases containing demographic and clinical information on cancer patients treated within their jurisdictions. These databases can serve as excellent sources for sampling purposes. The National Cancer Institute Community Cancer Centers Pilot Program used cancer registries at 10 cancer centers to sample and analyze patient cancer care experiences. These registries were the basis for a multi-mode survey design that supported the cancer centers' technical constraints while minimizing burden to the patients. We present a cost-efficient sampling method to select probability patient samples without the use of personal identifying information. This work should be informative for other survey designs that sample patients from different types of disease registries.