FORCE and researchers at the University of South Florida formed the ABOUT Patient-Powered Research Network to help advance hereditary cancer research. Below is a list of some of our most recent research collaborations. Follow the links for details about each project, and the status of the research. You can search our entire list of collaborations by category, relevance, stage of research or keyword.

START: Developing and Pilot Testing a Graphic Novel for Men at Risk for Hereditary Cancer

Research Cycle:
Conduct Research

START: Developing and Pilot Testing a Graphic Novel for Men at Risk for Hereditary Cancer

The goal of this study is to develop and pilot test a graphic novel to increase men’s hereditary cancer knowledge, manage their uncertainty, and assist them in making decisions related to their health and family. We will work with men with BRCA mutations who are willing to share their real-life experiences to guide these efforts.

Using Genetic Navigation to Increase Genetic Counseling and Testing in Community Settings

Research Cycle:
Plan and Prepare

Using Genetic Navigation to Increase Genetic Counseling and Testing in Community Settings

The project focuses on increasing outreach to community members to identify people with hereditary cancer risk and help them manage it proactively. The project focuses on addressing health literacy challenges.

Testing Telephone Genetic Counseling to Increase Genetic Risk Assessment in Latinas at Risk of Hereditary Cancer

Research Cycle:
Conduct Research

Testing Telephone Genetic Counseling to Increase Genetic Risk Assessment in Latinas at Risk of Hereditary Cancer

Many LatinX people are not offered genetic counseling and testing recommended by national guidelines. This study will compare telephone genetic counseling culturally tailored for LatinX patients to usual care. 

Energetics and Lifestyle in Inherited Syndromes (ELLIE’s Study)

Research Cycle:
Conduct Research

Energetics and Lifestyle in Inherited Syndromes (ELLIE’s Study)

ELLIE’s Project is designed to look at factors that may affect cancer risk in people with inherited mutations linked to cancer. The study will look at weight, body mass index (BMI), metabolism, dietary habits and activity level over the course of people’s life-time.

Studying Long Term Menopause Effects in Women with Inherited Mutations Who Undergo Risk-Reducing Surgery

Research Cycle:
Plan and Prepare

Studying Long Term Menopause Effects in Women with Inherited Mutations Who Undergo Risk-Reducing Surgery

This study will look at long term outcomes of risk-reducing oophorectomy and surgical menopause in women at high risk for ovarian cancer due to an inherited mutation.

Using a New Biomarker in the Blood to Detect Cancers in People with Inherited Mutations

Research Cycle:
Plan and Prepare

Using a New Biomarker in the Blood to Detect Cancers in People with Inherited Mutations

People with inherited mutations in BRCA1, BRCA2 and other genes have a very high risk for cancer. Cancers caused by a mutation may have high levels of genome instability, which may be identifiable through blood tests.  We will test a biomarker that we believe may be a highly sensitive for the early detection of cancers in people with BRCA mutations.

Olaparib Expanded Trial

Research Cycle:
Conduct Research

Olaparib Expanded Trial

Olaparib Expanded is a study looking at whether the drug olaparib is effective treatment for people with certain types of metastatic breast cancer.  Olaparib belongs to a class of drugs known as PARP inhibitors. PARP inhibitors are particularly effective for treating tumors in people with an inherited BRCA mutation. This study is looking at whether olaparib is also effective for treating metastatic breast cancer in people who do not have an inherited BRCA mutation.

Women Choosing Surgical Prevention (WISP) Trial

Research Cycle:
Evaluate

Women Choosing Surgical Prevention (WISP) Trial

The goal of the WISP Study is to compare whether removal of fallopian tubes only, delaying removal of the ovaries can safely improve sexual functioning and menopausal symptoms compared to standard risk-reducing removal of the ovaries and fallopian tubes (also known as risk-reducing salpingo-oophorectomy or RRSO). 

A Study of Folate Levels in Patients Treated with Olaparib

Research Cycle:
Conduct Research

A Study of Folate Levels in Patients Treated with Olaparib

This is a study looking at folate deficiency (lack of folic acid in the blood) in patients who take the drug olaparib (Lynparza) to treat their advanced ovarian or breast cancer. The main goal of this study is to measure how often and when folate deficiency is most likely to occur; and to learn more about whether giving folic acid supplements (vitamins) will help delay or avoid deficiency in these patients. Folate deficiency can cause side effects and lead to reduction or stopping of treatment with olaparib.

A Study to Compare Two Surgical Procedures in Women with BRCA1 Mutations to Assess Reduced Risk of Ovarian Cancer (SOROCk)

Research Cycle:
Conduct Research

A Study to Compare Two Surgical Procedures in Women with BRCA1 Mutations to Assess Reduced Risk of Ovarian Cancer (SOROCk)

Women with a BRCA1 mutation ages 35 – 50 at risk for ovarian cancer are eligible for the SOROCk study. SOROCk will determine if removal of fallopian tubes alone can reduce the risk of ovarian cancer nearly as much as removing both the ovaries and fallopian tubes. Preserving the ovaries will prevent surgically-induced menopause. The study will also examine quality of life.

Men at High Genetic Risk for Prostate Cancer

Research Cycle:
Conduct Research

Men at High Genetic Risk for Prostate Cancer

Men with an inherited mutation linked to increased risk for prostate cancer may benefit from enhanced cancer screening. The National Cancer Institute opened a clinical trial for prostate cancer screening study looking at MRI to improve prostate cancer detection.