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The ABOUT Network is a research registry that was created by FORCE in collaboration with genetics researchers from the University of South Florida, in Tampa. It is one of 18 patient-powered research networks that are part of the National Patient-Centered Clinical Research Network or PCORnet.
To empower informed health decisions and improve outcomes for people affected by hereditary breast, ovarian, and related cancers through patient-powered research.
This will be accomplished through building a highly-inclusive, and collaborative network governed by and for the hereditary cancer community. The network will: assess community needs and questions, collect patients’ health information and healthcare experiences, collaborate with other researchers and networks, design and conduct patient centered outcomes research, promote clinical trial enrollment, and share the results with the community.
The ABOUT PPRN represents the hereditary cancer community in PCORnet.
A research registry collects information on patients who are interested in participating in research. Participants read and agree to a consent form to participate, then fill out a questionnaire. Registries allow researchers to contact patients directly and periodically over time to follow their health outcomes, gather their input and experiences, and match them to studies they might be interested in.
Research done through the ABOUT Network will focus on unanswered questions that patients think are important. FORCE will work with those affected by hereditary breast, ovarian and related cancers to help identify where more research is needed, to help people make informed medical decisions, and to set priorities for the research to be done. All research done through ABOUT will be designed to answer questions from the community, and the results will be shared back with you. The ABOUT Network will be led by members of the community. People affected by HBOC and related cancers will have opportunities to apply to participate in governance of the network through the ABOUT Network Steering Committee.
"Patient-Powered Research" also known as "Patient-Centered Outcomes Research" is a new category of research that involves input from consumers and patients at every level of the research. Patients have input into:
Patients and people affected by hereditary cancer participate as full partners in setting priorities and decision-making.
Research done through the ABOUT Network will focus on unanswered questions that patients think are important. ABOUT will work with those affected by hereditary breast, ovarian and related cancers to help identify where more research is needed, to help people make informed medical decisions, and to set priorities for the research to be done. All research done through ABOUT will be designed to answer questions from the community, and the results will be shared back with you. The ABOUT Network will be led by members of the community. People affected by HBOC and related cancers will have opportunities to apply to participate in governance of the network through the ABOUT Network Steering Committee.
Anyone (men or women) who has been diagnosed with, has a family history of, or is at increased risk for breast, ovarian, melanoma, prostate, pancreatic or related cancers can enroll.
Examples include:
Yes. Every research study has different goals and you may participate in more than one.
No. ABOUT also includes people who have a personal diagnosis of cancer or a family history of cancer but who have not had genetic testing.
PCORnet is also known as the National Patient-Centered Clinical Research Network. PCORnet is a new national resource that was created by the Patient Centered Outcomes Research Institute (PCORI). Both PCORI and PCORnet are government-funded efforts to conduct research that is most important to patients. PCORnet's goal is to improve research by connecting data from patient electronic health records, claims data, and patient-reported outcomes. The ABOUT Patient-Powered Research Network is the only national research registry created by and for the hereditary cancer community and is one of the 20 patient-powered research networks in PCORnet.
PCORnet is called a “distributed research network.” This means that each group or network participating in PCORnet (such as the ABOUT Network) will only share certain non-identifying information that is needed to answer research questions. Any information (such as your name or contact information) that could identify you is stripped from your record before it is shared. Your health data will be assigned a unique code that is used instead of your name. This process is known as “de-identifying data.”
Together, PCORnet will have over 70 million participants. Each network in PCORnet is responsible for collecting information from their participants, and each network will make its own decisions on the specific research projects and studies in which it will participate or share de-identified data. All networks are required to receive approval from a nationally approved Institutional Review Board (IRB) and abide by government requirements to protect the privacy and confidentiality of the research participants. The ABOUT Network will not share identifying information with anyone without a participant’s specific permission.
Examples of situations where participants in ABOUT have given consent for identifying data to be shared include collaborations in research studies with other networks in which the ABOUT participant is also participating (for example, an individual has provided informed consent and identifiable data to ABOUT and is also a patient at a clinical center or hospital in one of the health networks in PCORnet). For participants who have provided informed consent for the release of their EHR/medical record data, ABOUT may request their EHR data from the hospital or clinic, which requires using the participant’s name and sufficient identifying information to ensure accurate identification (for example, date of birth). This allows linkage of the participant’s questionnaire and medical record data so ABOUT can include their health outcomes with those of the other research participants.
Personal identifying information will not be shared with PCORnet. The ABOUT Network will share what is known as de-identified data with the PCORnet Distributed Research Network. This allows you to contribute your health outcomes in combination with the outcomes of others to the larger network of 70 million individuals without your personal information being shared outside of the ABOUT Network. The ABOUT Network may share de-identified data with the PCORnet Distributed Research Network, researchers conducting studies of interest to the HBOC community, its collaborators and the public as determined by ABOUT’s patient-centered network leadership (led by patient majority).
The ABOUT Network policy – under the oversight and protection of the University of South Florida Institutional Review Board (IRB) - is that we will never share your personal identifying information without your permission with any party outside of the ABOUT Network research study team and research entities charged with ensuring the quality of the research. Whenever identifiable information is shared, it will always be limited to the minimum data necessary. Participants’ identifiable information will not be sold nor shared for any non-research purpose.
Personal identifying information will not be shared with PCORnet. The ABOUT Network will share what is known as de-identified data with the PCORnet Distributed Research Network. This allows you to contribute your health outcomes in combination with the outcomes of others to the larger network of 70 million individuals without your personal information being shared outside of the ABOUT Network. The ABOUT Network may share de-identified data with the PCORnet Distributed Research Network, researchers conducting studies of interest to the HBOC community, its collaborators and the public as determined by ABOUT’s patient-centered network leadership (led by patient majority).
ABOUT maintains the identifiable information participants provide using the highest standards of data security. Data intended for sharing is first de-identified by stripping it of all identifiers and assigning a unique code that is used instead of your name or other identifiers. The name or identity of the person assigned to the code is not shared outside of the ABOUT Network research team and authorized officials.
Participation in the ABOUT research registry is an agreement where both researcher and participant commit to work together to answer research questions for the common good. The database and the information contained within it reside at the University of South Florida under strict IRB oversight and laws that govern human subject research and protect participant privacy and confidentiality. There is no “ownership” of your personal health information and your identity will never be sold. The policies regarding research questions and priorities, collaborations, privacy, and data sharing are set by the patient-centered governance of the ABOUT Network, the majority of which are patients and members of the HBOC community. Participants are free to withdraw from the registry at any time. Once withdrawn, their identifying information will be removed from the database, no further information will be collected, and no additional research will be conducted involving that participant.
ABOUT's goal is to learn from the HBOC community the most important unanswered medical questions, prioritize the questions, determine which questions can be answered through ABOUT research, and develop studies to answer them.
ABOUT developed a patient-driven research process, known as "GAP360." GAP360 allows people from our community to submit their unanswered medical questions. We use a seven-step process to turn these questions into well-defined research questions that can be answered through ABOUT research.
The seven steps of GAP360 includes:
Members of the HBOC community can apply to participate in the ABOUT Network Work Groups, committees and/or Steering Committee by completing the FORCE Research Advocate Training (FRAT) Program and filling out an online application. Steering Committee members are selected with the goal of achieving representativeness of the entire HBOC community across gender, race, ethnicity, age, health challenges, etc.
No, there are no costs associated with participation in the ABOUT Network.
Participation in ABOUT does not involve any drugs or therapies. It is a mechanism to collect important information for research on the factors that impact the health outcomes of people affected by hereditary cancers.
Our questionnaire asks about your personal health history like any diagnosis of cancer, or treatments and also asks about family history. Even if you do not recall and do not have access to your complete medical records, you can fill out as much information as you know. Once you have created your profile you can go back and fill in additional information as needed.
After signing in you will read and sign a consent form, then fill out a brief questionnaire on your personal and family cancer history. The entire process should take 15-25 minutes
In order to enroll, you need to agree to the “informed consent,” to participate in the ABOUT Network, and to create an account by providing some basic information. After creating your account, you may choose to complete a survey on on your personal and family cancer history, or you can do this at a later time.
Enrollment in the ABOUT Network is voluntary and you may withdraw your consent at any time.
ABOUT is a Patient-Powered Research Network in PCORnet®, the National Patient-Centered Clinical Research Network, an initiative funded by the Patient-Centered Outcomes Research Institute (PCORI).
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