About

YOU MAY HOLD A KEY TO THE CURE

We’re looking for patients and survivors, like you or your loved one, who have experienced uterine or endometrial 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 uterine 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 uterine 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 uterine or endometrial 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 uterine or endometrial 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 uterine cancer, but others do not?   Uterine 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 uterine cancer by raising awareness. We need to help women manage the many burdens and strains associated with uterine 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 uterine 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 Uterine Cancer Registry receives funding and support from Inova Health System. In addition, some of the funding for this project was from the Uniformed Services University of the Health Sciences from the Defense Health Program (HU0001-16-2-0006) to the Gynecologic Cancer Center of Excellence, PI: Chad A. Hamilton, Co-PI: G. Larry Maxwell, and administered by the Henry M Jackson Foundation for the Advancement of Military Medicine (HJF).  The views expressed on this website are those of the authors and do not reflect the official policy of the Department of Army/Navy/Air Force, Department of Defense, or U.S. Government. The authors of this website have no conflicts of interest to disclose. 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.