Women's Health Initiative Life and Longevity After Cancer Study (LILAC)

This study augments the existing Women's Health Initiative (WHI) to develop a unique resource to support studies of cancer survival, survivorship and molecular epidemiology.

Title: Women's Health Initiative (WHI) Life and Longevity After Cancer (LILAC) Study

Principal Investigator: Jean Wactawski-Wende, PhD

Funding Agency: Kaiser Permanente Division of Research

Period: 07/02/14 - 07/01/19

Abstract: The WHI Cancer Survivor Cohort’s goals are: 1) To collect information on cancer treatment and outcome and on long-term effects of treatment in women diagnosed with cancer (other than non-melanoma skin cancer) during their WHI participation (past or future), using CMS (Medicare) linkage or direct medical record abstraction; 2) To expand the WHI biorepository by collecting paraffin embedded tumor tissue from selected cancers sites; and 3) To conduct methodological research aimed at streamlining and validating the data collection methods. This expansion of resources will facilitate research on the etiology and risk factors for cancer incidence, cancer recurrences and survival, with a particular emphasis on the contribution of co-morbidities lifestyle factors, molecular and genetic factors, and treatment-related factors (ie type of treatment and adherence) that decrease the risk of second and recurrent cancers.  In addition, we will be able to examine the effects of cancer diagnoses and treatment on overall health and quality of life within the larger WHI cohort. The study is coordinated through the WHI Clinical Coordinating Center. The WHI CCC staff will conduct all participant mailings to include collection of an informed consent form, a medical release of information form, and annual questionnaires. The WHI CCC will also conduct all tumor tissue collection, testing, and storage. The WHI CCC staff will identify eligible WHI participants who will require retrieval of medical records to include information related to diagnosis, treatment, and related outcomes. This information will be forward to WHI RC staff through established methods (secure database access). WHI RC staff will use information provided by CCC staff and either the participant-signed ROI form for living women or a partial waiver of consent approved by the FHCRC IRB to retrieve records. These records will be reviewed for completeness, scanned and transferred to the WHI CCC through an established secure data transfer.