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Establish a Network for Direct Patient Engagement

NCI has announced several funding opportunities that align with the Cancer Moonshot.

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The Blue Ribbon Panel (BRP) recommended establishing a network for direct patient engagement that could provide cancer patients with the opportunity to receive comprehensive tumor profiling, the results of which could be entered into a linked network of databases. The information obtained would be used to help researchers better understand what interventions work, in whom, and in which types of cancer. Engaging patients and researchers to work together towards a shared vision and implementation of the network was considered to be critical to advance cancer research and care.

Increasing the diversity of research participants was also a critical need noted by the BRP. When and how cancer develops, and how cancer treatments work, can be different in different populations and different communities across the country. A network for direct patient engagement could help provide information and opportunities for a broad and diverse group of patients to participate in research. Representing all populations in research is extremely important in order to better understand cancer and improve therapy options for all. Such a network could also "pre-register" patients for clinical trials by enabling them or their physicians to be contacted if their tumor’s profile fits the eligibility criteria for a clinical trial.

Ultimately, the hope is that a network would expand research participation, improve access to data from advanced tumor profiling to improve the identification and treatment of cancers, and improve knowledge about cancer outcomes across diverse patient populations.

NCI has funded several programs and workshops that align with this recommendation to increase direct patient engagement:

The Cancer Moonshot Biobank

Biospecimens donated by cancer patients are an important resource for understanding and accelerating cancer research. NCI created the Moonshot Biobank to collect tumor biopsy and blood biospecimens from a diverse patient population. Researchers will use the biospecimens and associated data to help answer pressing questions in cancer research, including why some patients respond to a particular cancer treatment and some do not. The Biobank will provide comprehensive tumor profiling to participating patients and their physicians. The results may be used to help guide patient care and will provide information about eligibility for clinical trials. The Biobank will make the biospecimens and associated data, including the tumor profiling data, available to researchers to accelerate progress in treating cancer.

NCI Rare Tumor Patient Engagement Network

This NCI project is building a network of researchers, cancer patients, and advocacy groups to advance the research of rare pediatric and adult tumors. This collaborative effort is collecting and analyzing tumors from patients with rare cancers that will inform new research studies and promote the development of new treatments for rare cancers. The network is also translating findings into new clinical trials for patients with rare tumors.

The network is working to engage patients with rare cancers by expanding access to clinical trials across a diverse population of cancer patients. It is also providing patients with greater access to their own data and the results of clinical trials.

Through clinics and symposia, researchers are directly interacting with patients in the network, leading to new discoveries about the relationships between tumor biology and patient symptoms, as well as determining new clinical trial endpoints.

The NCI Comprehensive Oncology Network Evaluating Rare Central Nervous System Tumors (NCI-CONNECT) is a program within the Rare Tumor Engagement Network. NCI-CONNECT is using patient-advocacy-provider partnerships to improve the understanding and treatment of rare central nervous system cancers in adults.

The network also includes MyPART: My Pediatric and Adult Rare Tumors Network. This program is focusing on research across a range of pediatric, adolescent, and young adult rare solid tumors. MyPART is teaming with advocacy groups to raise rare tumor awareness among researchers and increase access to biospecimens for rare tumor research.

Portal to Support Direct Participant Engagement

NCI is developing a website to enable ongoing interactions between patients and researchers, which will promote collaborative efforts to advance cancer research. The portal also aims to act as a patient gateway for Cancer Moonshot initiatives supporting patient engagement, including the Moonshot Biobank, the NCI Rare Tumor Patient Engagement Network, and the PE-CGS Network.

At the Crossroads of Social Media and Clinical Trials: A Workshop on the Future of Clinician, Patient and Community Engagement

During this highly interactive workshop clinical trial experts, community oncologists, cancer advocates, and patients, as well as social media and communications experts explored innovative ways to successfully connect and engage with patients, physician and the community at large online. By sharing experiences and planned initiatives, participants considered ways to enhance awareness and understanding of clinical trials through social media.

Executive and full summaries of the two-day proceedings are available for download:

Archived recordings of the workshop can be accessed through NIH Videocast:

Symposium on Personal Control of Genomic Data for Research

This two-day multisession symposium hosted advocates, researchers, policy leaders, and the public to explore the impact of personal control of genomic data sharing to research, clinical care, and participants well-being and engagement.

The landscape of genomic medicine is rapidly evolving and includes direct access to low-cost genomic sequencing through direct-to-consumer genetic testing and commercial services providing sequencing and interpretation. Increasingly, individuals want to share their genomic data and associated clinical information for research purposes. Several models exist to enable personal control of sharing of genomics data. For individuals who want to make their personal genomic data available for research or third parties for analysis or interpretation, little support exists to answer questions, provide technical support, or give feedback on the value of their data.

The symposium hosted sessions on the following topics:

  • Motivations for and perceptions of participants controlling their own data
  • Facilitating personal control of sharing data: existing approaches and platforms
  • Risks and benefits to participants and their communities
  • Sharing data in healthcare settings – the role of individuals who wish to share their data

An executive summary and publications from the workshop are coming soon.  Recordings will be posted here

Participant Engagement and Cancer Genome Sequencing (PE-CGS) Research Network

The PE-CGS Network supports the direct engagement of cancer patients and cancer survivors as participants in cancer research.

The PE-CGS Research Centers are using direct participant engagement approaches to promote cancer genome sequencing programs that can address important knowledge gaps in the genomic characterization of tumors. The network is specifically interested in using direct participant engagement to advance the understanding of rare cancers, highly lethal cancers, cancers with an early age of onset, cancers with high disparities, and cancers that are prevalent in understudied populations.

The PE-CGS Coordinating Center manages data sharing and collaborative network activities, performs outreach activities to the broader community, and develops best practices and procedures for the network.

Awarded Projects
Funding Opportunity Project Title Institution Principal Investigator(s)
Participant Engagement and Cancer Genome Sequencing (PE-CGS): Research Centers (U2C) Engagement of American Indians of Southwestern Tribal Nations in Cancer Genome Sequencing University of New Mexico Health Sciences Center Willman, Cheryl L; Trent, Jeffrey M
Count Me In: Partnering with patients to define the clinical and genomic landscape of rare aggressive sarcomas in children and adults Broad Institute, Inc. Wagle, Nikhil; Janeway, Katherine A
Participant Engagement and Cancer Genome Sequencing (PE-CGS): Coordinating Center (U24) Participant Engagement and Cancer Genome Sequencing (PE-CGS): Coordinating Center Ohio State University Bridges, John; Ma, Qin; Paskett, Electra D
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