Research & Clinical Trials

Participating in research allows people to contribute to medical knowledge and offers the opportunity to receive cutting-edge care.

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Participating in Research

Types of Research

Critically important clinical trials could not be conducted without the commitment of FORCE to the development and completion of cancer prevention, detection, treatment and quality of life research.

Judy E. Garber, MD MPH
Director, Center for Cancer Genetics and Prevention at Dana Farber Cancer Institute

Experts design and conduct many different types of medical research to answer different types of questions.

Cinical Trials

Clinical trials are designed to determine whether a new drug, laboratory test, or other intervention is effective, and how it compares to what is currently available. Examples of an intervention include:

    • a drug for the prevention or treatment of a disease or the management of disease symptoms
    • a combination of drugs or a drug combined with other therapies
    • a screening technique
    • a laboratory test
    • a decision-making guide, or
    • a prescribed lifestyle change

Clinical trials measure different outcomes. Some determine whether or not an intervention helped patients to live longer, caused a tumor to shrink, or delayed the return of a disease. Other clinical trials look at whether the treatment lessened symptoms or improved the well-being of patients. Clinical trials may record objective outcomes, such as patient survival, tumor size or spread, or may involve more subjective “patient reported outcomes,” including degree of pain, fatigue, emotional, social, or sexual function; sleep disturbance; or general sense of well-being. Some clinical trials measure both types of outcomes.

In clinical trials designed to demonstrate whether or not an intervention is effective, participants are assigned to one of two groups:

    • the experimental groups that receive the intervention being tested
    • the control group that receives either the intervention that is currently used, if there is one available, or a placebo, depending upon the trial

Participants in a randomized control trial are randomly assigned to either the experimental or control group. The chance of being assigned to one or the other is the same.

In trials that test specific surgeries, lifestyle changes, or devices, patients and researchers typically know whether they are in the experimental group or the control group. Clinical trials that test drugs are often double-blind studies, where neither the participants or the researchers are aware of who is in which group, thereby eliminating the potential for bias on the part of researchers and participants.

Surveys

Research surveys ask participants questions concerning their demographics, health, and lifestyle information. Surveys may ask participants about their current state of health, past experiences and decisions, personal preferences, and future plans. These “patient reported outcomes” help medical professionals to understand participants’ concerns regarding their health care needs; they also help people make informed health care decisions.

Registries

Patient registries are used to observe how an individual’s health changes over time. Registry participants complete questionnaires about their health history and lifestyle choices, and may also provide samples of their blood, saliva, or tissue. Patients enrolled in registries may be asked to update their history or provide more samples over time so that researchers can assess the outcome of their treatments and/or lifestyle choices. Some registries also allow researchers to contact and inform enrolled patients of new research opportunities.

Comparative Effectiveness Research

Comparative effectiveness studies compare two known effective treatments to find out which works best for all patients or for a particular group of patients. This type of research is particularly important for people who face a variety of HBOC-related risk-management options. Comparative effectiveness research allows patients to better understand the risks and benefits of each medical option and decide which is best for them given their personal preferences, and their individual and family health history.

Learn about the latest breakthroughs in research and our ABOUT Network.

Featured Research

With input from our Scientific Advisory Board, FORCE critically evaluates new research articles on topics of interest to our community and makes the science understandable and accessible to our community.

Join the ABOUT Network

The goal of the ABOUT network is to enroll as many Americans with HBOC risk as possible into our research registry and to collect information and real world health care experiences that can be used along with information from medical records to improve care for people with HBOC.