WHI Life and Longevity After Cancer Study (LILAC)

Overall Goal:

Augment the existing WHI to develop a unique resource to support studies of cancer survival, survivorship and molecular epidemiology.

Study Summary:

The WHI Life and Longevity After Cancer (LILAC) Study was funded by the National Cancer Institute with study goals of enrolling WHI participants who have been diagnosed with cancer into a cancer survivorship cohort and then examining factors that may affect life and longevity among women who have been diagnosed with cancer. To accomplish these goals, the study will enroll women to participate in an annual questionnaire about health conditions and well-being, set up a biorepository of tumor tissue, and collect medical records to learn about cancer treatments and cancer recurrences.

Study Aims

  • Collect data on cancer treatment and recurrence in selected cancers through a variety of methods;
  • Add to the WHI biorepository by collecting paraffin-embedded tumor tissue from selected cancer sites to enhance our capabilities for the study of molecular epidemiology;
  • Evaluate new methodologies to develop and refine algorithms to extract cancer treatment and outcomes data from administrative databases; and
  • Develop a strong research program in cancer survivorship within WHI by encouraging a broad range of collaborators to utilize and take advantage of this resource.

Main Activities:

  • LILAC Survey to be sent to those with colorectal, endometrial, ovarian, breast, and lung cancers as well as melanoma, leukemia and lymphoma, baseline and annually
  • Collect treatment and recurrence data for the above cancers through a Medicare or HMO linkage and through direct medical record abstraction
  • Paraffin-embedded tumor tissue All cases of lung, colorectal, endometrial, and ovary cancers. All cases of triple negative breast cancer and a subsample of receptor positive breast cancers, until we reach a maximum of 2000 cancers
  • Cohort of age-matched WHI participants To understand the diagnosis of cancer and its treatment on the trajectories of aging, the accelerated aging phenotype, and age-related comorbidities, we established a cohort of age-matched WHI participants with similar data who were cancer free at the time they were identified for inclusion in the age-matched cohort.

Data Collection Forms

Study Structure

  • Executive Committee (EC): Garnet Anderson (FHCRC), Bette Caan (KPNC), and Electra Paskett (OSU)
  • Steering Committee (SC): EC members plus Ross Prentice (FHCRC), Peggy Porter (FHCRC), Larry Kushi (KPNC), Rowan Chlebowski (Harbor UCLA), Li Jiao (Baylor), and Scott Ramsey (FHCRC)
  • External Scientific Advisory Committee: Covers diverse expertise in cancer research and multiple institutions. It will meet once a year to advise on study infrastructure design and research agenda.

Scientific areas of particular interest

  • Influence of prediagnostic social, physical, and clinical factors on incidence by molecularly defined cancer subtypes.
  • Effect of pre and post-diagnostic risk factors on cancer survival by molecular subtype.
  • Evaluations of prognostic value of blood and tissue-based biomarkers on cancer outcomes.
  • Relationship between comorbidities and treatment, treatment complications, functional status, cancer prognosis, second cancers and the development of new comorbid conditions compared to similar women without cancer.
  • Health services resource utilization, health related quality of life, cost and cost-effectiveness as they relate to cancer diagnosis, treatment, and outcomes. Data Access

A summary dataset is available to WHI Investigators on the LILAC Data page. In general, manuscripts and ancillary studies will go through the WHI P&P or ASC committees for approval. Sponsorship by a LILAC investigator is strongly encouraged for all manuscripts using LILAC data. Collaboration with LILAC study investigators is required for access to LILAC specimens.

LILAC was funded by the National Cancer Institute. Please cite this inaugural report and other relevant LILAC reports when using LILAC data:

Paskett, E.D., Caan, B.J., Johnson, L., Bernardo, B.M., Young, G.S., Pennell, M.L., Ray, R.M., Kroenke, C.H., Porter, P.L. and Anderson, G.L., 2018. The Women's Health Initiative (WHI) Life and Longevity After Cancer (LILAC) study: description and baseline characteristics of participants. Cancer Epidemiology and Prevention Biomarkers, 27(2), pp.125-137.