SHAREFORCURES FAQs

Overview of ShareForCures®

ShareForCures is a breast cancer research registry by Susan G. Komen, connecting scientists with information from people who have or had breast cancer. When you share your breast cancer data with our registry – along with all other participants – you will help scientists make new discoveries faster.

A research registry — like ShareForCures — is a collection, or database, of standardized information about people with a specific diagnosis or condition to be used for one or more purposes. Some registries also collect tissue, blood and/or other biospecimen to be used for research.

Most research registries are created by researchers working at academic institutions for a specific use. A registry like ShareForCures is created and managed by patients or patient advocacy organizations, like Susan G. Komen, who then decide how the data are used and by whom. The goal of ShareForCures is to focus on research that will have the most significant impact for people affected by breast cancer.

Understanding ShareForCures

Today, researchers are learning about breast cancer from a small subset of patients, who are not representative of all breast cancer patients being treated across the United States, each day. ShareForCures offers people who have been diagnosed with breast cancer a way to participate in research. Sharing your breast cancer information with our registry — along with other ShareForCures participants — will help researchers discover cures for breast cancer faster. Through ShareForCures, we’ll connect different types of health data from many people over time to create one of the most valuable tools available for breast cancer research.

Scientists need data to inform their work. The more data we can collect from more people who have or had breast cancer, the more useful the data are to support research efforts. Breast cancer is different from one person to another—based on your biology and lived experience. We aim to build a robust registry that is as diverse as is the breast cancer community itself and offers an opportunity for people from all backgrounds to participate in research. Finding the best ways to conquer metastatic and aggressive breast cancers, eliminate breast cancer disparities, and improve health outcomes for everyone is critical.

Sharing data about yourself, your overall health, and your breast cancer experience can be the key to advancing personalized care for everyone and help discover the cures for breast cancer. Together, we can do more to save lives.

Participation in ShareForCures

Participation is open to anyone 18 years of age or older*, living in the United States, and who has been diagnosed with breast cancer.

*Individuals in Alabama and Nebraska must be over 19 and individuals in Mississippi and Pennsylvania must be over 21 to participate.

It starts with a person like you wanting to help unlock the next breast cancer breakthroughs. Joining ShareForCures is safe, secure, easy and makes a difference. You can join for free in three steps:

  1. Create a user account.
  2. Complete the informed consent and medical release forms.
  3. Provide information about yourself and your breast cancer diagnosis.

An informed consent explains what is involved in a research study. It provides the benefits and risks of participation and ensures you understand that you are voluntarily agreeing to participate in research. ShareForCures is a research project, and all people eligible to join will be asked to review and voluntarily sign an informed consent form to participate.

When you sign the informed consent and the medical release forms, you are agreeing to participate. These forms, which provide more detail, will be giving ShareForCures permission to, for example:

  • Obtain and securely store your medical records, saliva samples and existing tumor samples, perform genomic sequencing on tumor and saliva samples, and organize your data.
  • Use the data for research studies, including studies that have not yet been designed, studies involving diseases other than cancer, and/or studies that may be for commercial purposes (such as the development or approval of new drugs).
  • Share your data with qualified researchers for approved research studies. Researchers who will gain access to ShareForCures will only see data that are not directly identifiable to you, either because they were deidentified or anonymized.
  • Provide updates about research projects using ShareForCures, share additional research opportunities, and contact you to request additional information.

We want to make participating as easy as possible. You can participate in ShareForCures online, when and where you want. People who join ShareForCures agree to provide information about themselves, their breast cancer diagnosis, and topics like quality of life and family history by completing surveys, questionnaires and debriefs. You may be asked to provide a saliva sample. If so, we will send you a saliva kit in the mail with pre-paid postage that you can easily return it at no cost to you.

Yes. There is no cost to participate in ShareForCures. Our goal is to make it as easy as possible for people to participate, so we can provide researchers with a more diverse set of data to make new breast cancer discoveries, faster, and improve outcomes for everyone.

Risks:

  • Whenever you share data, there is a risk of misuse, unauthorized access and disclosure, and destruction of such information. However, we have procedures and security measures in place to help minimize this risk and protect the confidentiality of your information.

Benefits:

  • Research provides hope for the future. By joining ShareForCures, you will help us and other researchers learn more about breast cancer to improve the care of breast cancer patients in the future. We will provide you with updates about research findings and how your data are making a difference.
  • You may benefit from the use of ShareForCures features, including getting access to your medical records in an accessible format and access to breast health information and resources that will help you better understand breast cancer.

Your participation is completely voluntary. You may withdraw (opt-out) from ShareForCures at any time without giving a reason and without penalty. If you withdraw, Komen will not include your data in any future research studies. However, we will not be able to remove information that has already been used or shared with researchers or that has been used to carry out oversight activities that are needed to ensure quality of a past or ongoing research study. Unless you withdraw or let us know otherwise, please note that your data and biospecimens will continue to be available to researchers after your death.

Data Privacy and Protection in ShareForCures

ShareForCures will collect different types of data. Some information will be provided by you when you fill out surveys and questionnaires. Medical records may be collected with your consent and authorization from your providers, like your primary care physician and oncologist, to learn more about your breast cancer and overall health. Some people will be asked to provide saliva samples for genomic sequencing. It will be free and easy for you to securely provide your data to ShareForCures.

ShareForCures data will be used for research, including research studies that have not yet been designed, studies involving diseases other than cancer and/or studies that may be for commercial purposes (such as the development or approval of new drugs).

At this early phase of ShareForCures, your data is not currently available for researchers to access. Komen will open an application process for researchers at a later date where researchers will follow several steps to request access to de-identified data in ShareForCures. Komen will review all applications and has sole discretion to approve or reject all researcher requests.

Any information about an individual (names, addresses, phone numbers, etc.) that can be used alone or in combination to identify that individual is called an identifier. Data are considered de-identified when identifiers, such as names, contact information, locations, and dates, have been removed or modified. Re-identification may still be possible. Data are considered anonymous when they cannot be traced back to a specific person.

Your privacy and the confidentiality of the information you share with us are important to us. ShareForCures will safeguard storage and transfer of your data and protect your confidentiality by using reasonable care, established security measures and by following applicable guidelines, regulations and laws that protect the privacy of participants and the security of health and research data.

Komen may share identifiable information with its trusted vendors to help facilitate the collection of your health information and records. Komen does not provide direct access to or share any information with researchers that could reasonably be used or combined to identify you as a participant of ShareForCures. Your name, contact information and other personal identifiable information will be removed before your data are shared with researchers or results of research studies are made public.

Completing Surveys in ShareForCures

Yes, your answers will be saved as you complete each survey screen. You can exit the survey and return at any time to complete the remaining questions. When you return to the survey, you will be sent to the screen where you stopped. Please take all the time you need to complete each survey.

Before you submit each survey, you can change your responses to any item by navigating back to the appropriate screen. Once you submit a survey, you will not be able to change your answers. If you are concerned about an error on one of your surveys, please complete a “Contact Us” request by logging into ShareForCures.

If a question requires a response, it cannot be skipped. However, you can choose not to complete the survey, and your answers will not be used in ShareForCures. If you decide that you would like to complete the survey later, you can do so at any time by returning to the survey, if still available, and providing a response.

We understand and respect your concern. No, you do not need to withdraw from ShareForCures to protect your family’s information. We do not ask you to identify your family members, relatives and/or children. Some surveys, such as the Family Health History survey, may ask for the medical history of your family members, but they do not ask for their names. You can choose to not complete a survey and still participate in ShareForCures.

Accessibility in ShareForCures

While we do our best to develop surveys that are easy to understand, some questions may feel hard to answer. We encourage you to answer the questions to the best of your understanding or ability. You can choose to exit a survey and return at another time to complete it.

Yes, you can still complete the survey even if you are unsure of some of the answers. We encourage you to answer the questions to the best of your understanding or ability. When available, you can also answer “I don’t know” if you are unsure of specific answers, such as your diagnosis. More general information about breast health and breast cancer can be found on komen.org.

Currently, surveys are only available through the ShareForCures platform. In the future, we may develop paper-based informed consent and study materials. We will notify all ShareForCures participants if the process becomes available.

Currently, ShareForCures is only available in English. In the future, we are planning to implement ShareForCures in other languages, including Spanish. We will notify all participants when ShareForCures becomes available in other languages.

Technical and other issues

For any technical issues, please contact the ShareForCures team at any time via phone (1-877-465-6636) or via contact forms available on Komen’s web platforms. In addition, participants can also contact the ShareForCures team through the “Contact Us” form available on the ShareForCures platform.

Currently, surveys are only available through the ShareForCures platform, and we encourage you to log into the platform and complete them online. In the future, we may develop paper-based informed consent and other materials. We will notify all ShareForCures participants if the option becomes available.

Because your medical record comes directly from your health care providers, we cannot change its contents. If you are concerned about errors on your medical record, please contact your health care providers directly. Additional information on this topic can be found here. (Please note that this link is being provided as a convenience and for informational purposes only. Komen bears no responsibility for the accuracy, legality or content of the external site or for that of subsequent links).

Additional Information about ShareForCures

For more information about ShareForCures, go online at komen.org/ShareForCures or call 1-877-465-6636.