Engagement Corner

Virtual Office Hours

Starting October 14, 2021, Cancer Moonshot Biobank study staff will hold virtual office hours every Thursday from 12 p.m. to 1 p.m. EDT. Sites are welcome to drop in any time over that hour to ask questions and give feedback. The office hours are not intended to replace phone calls and emails for sites’ urgent questions, but to provide a regular time each week when sites know study staff are available. More information and the WebEx link will be provided soon.

Q&A Meetings with Sites

Cancer Moonshot Biobank study staff have been having individual Q&A meetings with NCORP sites. Meetings with eight sites have already taken place. The conversations and feedback from local study teams have been very helpful and informative for all. In the coming weeks and months, study staff will be in contact to schedule additional 30-minute calls with NCORP affiliates. We look forward to hearing your thoughts, concerns, and questions. Please contact Dr. Jane Wanyiri (jane.wanyiri@nih.gov) if you wish to schedule one sooner.

CTSU Updates: What’s New

September 2021 NCORP Monthly Meeting slides are now available in CTSU

Spotlight: MaineHealth NCORP, implementing local engagement strategies to reach rural communities and improve their participation in research.

Site Principal Investigator: Anne Breggia, Ph.D.

Co-Principal Investigators (Community Engagement): Susan Miesfeldt, M.D., Neil Korsen, M.D.

MaineHealth NCORP consists of a network of seven hospitals serving a large, mainly rural population throughout the state of Maine and portions of New Hampshire, including several hard-to-reach island communities. MaineHealth joined the Cancer Moonshot Biobank in 2019 and in 2020 was selected as one of three Biospecimen Source Sites (BSS) awarded local engagement funding. This competitive funding was made available to support the Biobank’s aim to recruit and engage a diverse cohort of participants, including racial/ethnic minorities, and rural and other populations traditionally underrepresented in clinical research. Because every community has needs specific to their local populations, sites were asked to propose how they would use the funding to tailor local engagement and recruitment strategies. Funded sites take part in bi-monthly meetings during which the sites have an opportunity to network, share their progress, and discuss challenges.

MaineHealth is using the engagement funding to help identify barriers to Biobank participation within its rural populations and to develop resources to address these barriers. To achieve this, it is leveraging partnerships with rural oncology practices, advocacy groups, and other existing collaborations. Activities include convening a project Advisory Board whose members represent regional cancer support groups, oncologists, patients, research team members, and other stakeholders partnering to direct and oversee the work. The research team will conduct patient focus groups and one-on-one interviews with rural oncology practice office staff and oncology providers serving rural Maine patients. To guide the recruitment of focus group participants as well as support the design and development of educational resources, a Community Advisory Group was established and includes cancer patients from rural regions of the state, including central and coastal counties.

Despite challenges on support staff and reliance on telecommunication versus in-person contact due to the COVID-19 pandemic, MaineHealth has continued to move forward with local engagement activities. Recruitment for focus groups and one-on-one interviews are in progress and the development of patient and provider-centered educational and Biobank recruitment materials are anticipated to be completed by the end of 2021. Lessons learned and the resources developed will be shared across NCORP Biobank BSS, including those serving rural populations. MaineHealth presented their local engagement work at September’s monthly Biobank BSS meeting. A link to the recording can be found in CTSU.

Check out the Cancer Moonshot Biobank Engagement Website

(For Spanish, click the Spanish toggle button on top right of website.)

FAQ Highlights

Question 1:

We have a patient on the study, about to start bevacizumab + Folfuri. We previously sent in archival tissue for this patient because the baseline tissue samples were not good quality. It has been a while, and we kept the patient on study so that if they ever had another biopsy, we could collect some tissue for the Biobank. The patient has not had another biopsy but may in the future. They have not had more than one intervening treatment between the archival tissue and now. Can you confirm that the patient can stay in the study?

Response 1:

The patient should stay in the study. The Biobank is a longitudinal study of patients undergoing cancer treatment. Patients enroll in the study when they are beginning a new course of standard-of-care systemic treatment containing one of the targeted therapies listed within Table 1 of the protocol. We recognize that patients may or may not progress on that new course of therapy. We ask that patients not be removed from the study if they do not progress. The patient has already contributed valuable tissue, blood, and medical data to the study, and we want them to stay in the study for follow-up. If the patient’s cancer progresses, we ask that an additional biopsy is collected at that time. We also recognize that, should their cancer progress, the next course of treatment may not be a Table 1 therapy, but the patient should still stay in the study.

Question 2:

Our site needs clarification on colorectal cancer (CRC) qualifications. If someone has CRC, do they have to be mismatched repair deficient or microsatellite instability-high to be eligible for the study? Or are those criteria only relevant for submission to the Patient-Derived Models Repository (PDMR) laboratory?

Response 2:

Patients with CRC do not have to be mismatched repair deficient or microsatellite instability-high to be eligible for the study. The CRC biomarker qualifications you asked about only pertain to PDMR submission, which is optional for this protocol.

Medidata Rave Reminder

Please remember to enter essential data in Medidata Rave and respond to Rave queries in a timely manner.  If you have questions about Rave, please email STS.Support@theradex.com.

Reminders

• Please let us know if your site’s CRA or Lead CRA has changed. You can update your roster through RSS or by emailing Jane Wanyiri (jane.wanyiri@nih.gov). Up-to-date information is vital for study staff to provide timely access to eConsent, the Engagement Website, newsletters, and monthly meetings.
• The Biobank study covers the cost of consent form translations and approval by the IRB. Site-specific main consent forms are translated into Spanish for use in the eConsent application for all sites. Please reach out if your site needs the informed consent document translated into a language commonly spoken at your site.
• If your site would like an archival FFPE block returned, please provide a written request in the shipping box. It will take two-to-four weeks to return the material.

This year marks the 50^th anniversary of the National Cancer Act.

Learn how the National Cancer Act of 1971 helped to change the course of cancer research and why NCI is commemorating its 50^th anniversary throughout 2021. #NothingWillStopUs

The Man Working to Cure His Own Cancer

Josh Sommer was a college freshman at Duke in 2006 when he was diagnosed with a rare cancerous tumor called a chordoma at the base of his skull. Back then, there was little chordoma research happening, due to a lack of funding and necessary materials, such as cell lines and animal models; no existing chordoma tissue biobank; few researchers in the field; and no industry investment. So, Josh co-founded the Chordoma Foundation with his mother in 2007. Fourteen years later, the foundation has helped increase availability of chordoma models and opened the door for research. It also built up a network from a handful to now more than 300 scientists! These efforts have yielded several achievements, including seven chordoma-specific clinical trials and more on the way. The foundation has evolved to where it does not just create scientific connections, but also provides services and support for patients at every step of their disease.

Jane Wanyiri (jane.wanyiri@nih.gov) and Abhi Rao (abhi.rao@nih.gov) are your main contacts for the program; they will route your communications for answers within the NCI team.

SUBSCRIBER SERVICES:
Manage Subscriptions | Help