# Leveraging tumor registries and pathology specimens to facilitate genetic testing and traceback for ovarian cancer

> **NIH NIH U01** · KAISER FOUNDATION RESEARCH INSTITUTE · 2021 · $643,370

## Abstract

PROJECT SUMMARY/ABSTRACT: An estimated 1 in 190 women carry a pathogenic variant in BRCA1/2,
which is associated with an 46-57% risk of breast cancer and 20-40% risk of ovarian cancer by age 70.
Carriers account for 10% and 15% of breast and ovarian cancer cases, respectively, and up to 20% of high-
grade serous ovarian cancer cases, the most aggressive subtype. Despite recommendations that all ovarian
cancer cases should receive genetic counseling and testing, irrespective of family history and age at onset, a
recent national study indicated that only 10% of cases underwent genetic testing. This represents a missed
opportunity to inform these women and their at-risk family members about their future cancer risk. The
proposed study addresses this care gap by applying a traceback testing approach to retrospectively identify
women who have a prior diagnosis of ovarian cancer. These women will then be offered genetic counseling,
testing, and cancer risk assessment. This study will leverage tumor registries to identify prior cases of
ovarian cancer diagnosed within the past 10 years at two managed care healthcare systems (Kaiser
Permanente Northwest and Kaiser Permanente Colorado). The use of archived pathology samples for
germline genetic testing will allow family members of both living and deceased women to receive familial
genetic cancer risk information. We will assess: 1) the feasibility of and barriers associated with using tumor
registries and archived pathology samples for a traceback testing approach; 2) explore the ethical, privacy,
and policy implications associated with genetic testing in deceased patients to inform familial risk; 3)
characterize barriers to receiving genetic counseling at the time of diagnosis, including barriers to referral,
care access, and patient follow-up to. We have assembled a multidisciplinary team with expertise in
bioethics, genetic epidemiology, genomic medicine, biostatistics, health communication, and medical
genetics. We will engage patients, family members, providers, and health system administrators to guide
study design and characterize barriers to genetic testing in ovarian cancer. Our unique integrated health
information systems, tumor registries, and archived pathology specimens make us ideally suited to
investigate the feasibility of traceback testing. Generating evidence on the feasibility of traceback testing
using tumor registries and archived pathology samples is critically important to the guide future
implementation of such programs beyond ovarian cancer.

## Key facts

- **NIH application ID:** 10109101
- **Project number:** 5U01CA244323-02
- **Recipient organization:** KAISER FOUNDATION RESEARCH INSTITUTE
- **Principal Investigator:** Jessica Ezzell Hunter
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $643,370
- **Award type:** 5
- **Project period:** 2020-03-01 → 2024-02-29

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10109101

## Citation

> US National Institutes of Health, RePORTER application 10109101, Leveraging tumor registries and pathology specimens to facilitate genetic testing and traceback for ovarian cancer (5U01CA244323-02). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10109101. Licensed CC0.

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