About

PURPOSE and GOALS

Every year, 250,000 women globally are diagnosed with invasive ovarian, peritoneal or tubal cancer, and 140,000 women die of the disease. Unlike many other forms of cancer, ovarian cancer is typically diagnosed at an advanced stage.

The purpose of the Ovarian Cancer Registry is to recruit women with a history of ovarian, peritoneal and tubal cancer to join a movement and call to action to drive advances in patient-centric ovarian cancer research.Research performed using data from patients with the disease or condition of interest (in this case ovarian, peritoneal or tubal cancer) is the most likely to produce clinically meaningful results. The more people that sign up, the more effective the Registry will become.

Patients and survivors who join the Registry can collaborate directly in ongoing cancer research with clinicians, scientists, and many other types of professionals all working together to end ovarian cancer. Together we can make the difference!

If you are a patient or survivor with invasive ovarian, peritoneal or tubal cancer, please Join the Registry today.

If your loved one has invasive ovarian, peritoneal or tubal cancer, please share our information about the Registry and encourage them to become a member.

To learn more about the diverse team of clinicians, scientists and other professionals who work for the Registry, click here.

With the help of people like you, the Ovarian Cancer Registry will:

Study patient data to make rapid advancements in the prevention, early detection, and treatment of ovarian, peritoneal, and tubal cancer including:

  • Outcomes that are important to you in your treatment
  • Improved monitoring capabilities for the spread of your cancer
  • Better understanding of your response to treatments
  • Perceptions about new cancer treatments called biologic therapies
  • Symptoms that affected you most during treatment
  • Effects on your family dynamics and work related issues
  • Impact of lifestyle factors on your survival rates
  • Barriers you experienced during your diagnosis and treatment
  • Communication between you and your physicians as well as other health care professions
  • Perceptions regarding quality of healthcare
  • Ways to reduce barriers to access care
  • Methods to lower stress and anxiety you feel to possibly improve the effectiveness of treatments

Serve as a community for patients, survivors, friends, family members and advocates to share their stories, learn from and help one another, pay tribute to those who have lost the fight, and raise awareness about ovarian cancer. Community members may:

  • Make connections with one another
  • Provide support
  • Share personal stories
  • Pay tribute to those who have lost their battle with ovarian cancer
  • Get the word out about ovarian cancer and the Registry
  • Encourage others to advocate about ovarian cancer and spread the word about the Registry

Engage in public activities related to awareness (i.e. National Race to End Women’s Cancer, Globe-athon to End Women’s Cancer, Ovarian Cancer Day and regional race and walk events hosted by Gynecologic Cancer Foundation, Globe-athon to End Women’s Cancer, National Ovarian Cancer Coalition and other organizations.

YOU MAY HOLD A KEY TO THE CURE

We’re looking for patients and survivors, like you or your loved one, who have experienced invasive ovarian, peritoneal or tubal cancer to join the Registry. Your collective experiences will give the Registry the information that researchers need to conduct the kind of studies that could lead to advancements in the care and treatment of ovarian cancer; possibly even a cure.

HOW IT WORKS

The Registry is a central place to collect information from patients that will drive rapid advancements in the fight against ovarian cancer.

The Registry acts as an intermediary between patients and researchers.

When you join the Registry, we will ensure that your data is kept safe and secure, and used only by authorized individuals and for approved research projects. We have safeguards, protocols and guidelines in place at multiple levels to protect your privacy and confidentiality. The Registry serves as the go-between for members and researchers, providing an important safeguard to protect patient privacy and confidentiality.

The Registry divides data into three types to protect your privacy.

  • Personal Profile Information. Personal profile information is data submitted by individual patients and survivors, and is needed to operate the Registry and to directly communicate with its members.
  • Research Data. This type of data will directly support research projects. Research data is labeled with codes – not personal identifiers. Researchers will never be given access to personal profile information at any time.
  • Research Results. Research projects use research data to conduct studies and produce research results. These research results are submitted into the Registry to support and inform future collaborative research to advance knowledge regarding the detection, treatment, care, and prevention of ovarian, peritoneal or tubal cancer. Just as with research data, research results are labeled with codes – not personal identifiers.

The Registry and authorized Institutional Review Board approved research projects.

Researchers will only be able to access coded research data for projects that are approved first by an authorized Institutional Review Board, and then by the Registry based upon quality, scientific merits, feasibility, and potential for clinical and translational impact. The Institutional Review Board is responsible for reviewing research involving human subjects to ensure that the research is ethical. Using this process, the Registry will support many high-quality investigative studies

RESEARCH CHALLENGES

Most women with ovarian, peritoneal or tubal cancer are diagnosed in an advanced stage of the disease, and these women often need to undergo pelvic surgery and receive multiple types of chemotherapy. Although surgery in combination with chemotherapy is very effective in removing and killing cancer cells, the cancer often comes back and there are some patients (about 15%) who don’t respond. We need to learn how to stop the cancer from spreading and coming back. We also need to understand how to make resistant cancer cells respond to combination chemotherapy.

 

By asking patients questions about their cancer, lifestyle, other medical conditions, symptoms, stress, anxiety, depression, social support, physical activities and diet, we will be better able to understand how environmental factors play a role in the natural history of the disease.

 

Why do some women develop ovarian cancer, but others do not?

 

Ovarian cancer is a scary disease that is often deadly, in part because it is typically diagnosed at an advanced stage. We need to figure out how to do a better job getting the word out about ovarian cancer by raising awareness. We need to help women manage the many burdens and strains associated with ovarian cancer. We need to reduce barriers to medical care to be able to diagnose and start treatment in these women as quickly as possible. These are the type of high priority research challenges that the Registry will be trying to address.

 

Our immediate focus will be on investigative studies related to quality of life, access to care, and lifestyle related issues that correlate with the specific type of ovarian cancer that a patient may have. In the future, we may consent Registry members to participate in optional Registry sub-studies or independent companion research studies.  Members who consent to allow us to contact them for future studies will be approached once these opportunities become available if they satisfy the eligibility criteria.

FUNDING

The Ovarian Cancer Registry receives funding and support from Inova Health System and the Gynecologic Cancer Center of Excellence.  Additional funding sources and supporters are being recruited to advance this mission.

A NOTE ABOUT PRIVACY

Although the Registry will collect personal profile information from members for operational purposes, researchers will only receive coded data from the Registry for approved research projects. Research data gathered from this Registry will be de-identified, meaning no personal identifiers such as your name, initials, or date of birth will be attached. Coded research data will be made available to researchers who apply and are approved to perform research with the Registry. We take your privacy seriously, and we follow procedures during data collection and storage to keep your data secure.