February 27, 2024

A Message From Dr. Alain Monnereau

Research Program Director/PI

Cancer Registry of Greater California

I wanted to let you know that I will step down at the end February from my position as Research Program Director of the Cancer Registry of Greater California at the Public Health Institute. It has been a tremendous privilege and a pleasure to work for these past two years with such a committed and passionate group of professionals to coordinate the cancer surveillance and research in our catchment area. As a credentialed Principal Investigator (PI), I will keep a scientific relationship with PHI with the intention of developing new research projects in the cancer epidemiology field.

During the time of the recruitment for the next CRGC Director, Anshu Shrestha (SEER Co-PI and Research Manager) will serve as Interim Director for the Cancer Registry of Greater California. I wish you the best and will stay in touch with you at least in research projects.

CRGC Leadership Update

Judy Vang

Senior Director of Operations

Cancer Registry of Greater California

Please join me in thanking Dr. Alain Monnereau for his leadership during the last two years as the Research Program Director/Principal Investigator (PI) for the Cancer Registry of Greater California (CRGC). He will be stepping down from his role with CRGC effective February 27, 2024 to return back to France. It has been a pleasure having Dr. Monnereau lead our registry and bringing his deep scientific knowledge of cancer surveillance and research to CRGC. We will miss his contagious energy but are reassured that we have an ally and friend abroad championing the important work we all do. Merci beaucoup, Dr. Monnereau!

As we bid a warm farewell to Dr. Monnereau, we are also welcoming Dr. Anshu Shrestha as the interim Program Director/PI for our registry. Dr. Shrestha is a Senior Research Scientist and has been with CRGC for four years. She leads the Research Unit at CRGC and has served as the PI for many of our research projects including our most recent SEER Patterns of Care award. Thank you to Dr. Shrestha for her leadership during the interim period.

We are actively seeking an outstanding and visionary leader in the field of cancer surveillance and public health to serve as Executive Director for PHI’s Center for Cancer Surveillance and Research (the Center) and CRGC. To learn more about this exciting opportunity, visit the Public Health Institute website at: https://www.phi.org/employment/current-opportunities/executive-director-2/.  

Updates from the Research Unit

Anshu Shrestha, MPH, PhD

Senior Research Scientist

Cancer Registry of Greater California

Update on SEER POC Diagnosis Year 2020 Study

The Research Unit (RU) at the Cancer Registry of Greater California (CRGC), a program of the Public Health Institute (PHI), successfully completed another round of SEER Patterns of Care (POC) study in December, 2023. The purpose of this study was to investigate patterns of care for patients diagnosed with breast and colorectal cancers diagnosed in 2020, including diagnosis, treatment, biomarkers and therapies offered. It also aimed to collect data/documentation of the effects of COVID-19 pandemic on screening, diagnosis, treatment, and palliative care for these cancers. The study involved data abstraction for 900 eligible cancer cases, 450 breast and 450 colorectal cancer cases. This required effective management of the study workflow and strong team effort throughout the study period. CRGC continued to work remotely with limited time in the office. As such, this study could not have been completed without the huge support we received from hospital registrars and healthcare facilities who provided timely access to electronic medical records. We are grateful for this support and willingness to provide electronic records in a timely manner, which made it possible for us to meet the study goals. We hope that we will continue to receive similar support in future POC studies. 

Announcing a New Patient Contact Study

CRGC is collaborating with researchers from Georgetown University and multiple sites, including the New Jersey Tumor Registry/Rutgers University, on a study named, “Tracking Health and Responses to Living with Cancer (THRIVE).” The purpose of this study is to learn about individuals’ experiences living with advanced colorectal cancer and various aspects of their lives and healthcare that may affect their symptoms, side-effects, and quality of life. With improving cancer treatments, patients with metastatic cancer are living longer. However, there is limited knowledge about the patient-reported outcomes and survivorship care needs of persons living with metastatic cancer, including colorectal cancer. This study is aimed to address this research gap, which will involve surveying 1600 adults living with metastatic colorectal cancer over a one-year period from parts of California and New Jersey. 

Findings from this study will be used to inform development of interventions that can improve health outcomes and quality of life in future cancer patients. The study is a longitudinal observation study, meaning it will involve only collection of observational data such as patient experiences via a survey or from medical records (i.e., no treatment or other interventions will be given), and that the participants will be followed up for over a period to collect their experiences over multiple time points. 

The research team at CRGC’s Research Unit, led by Dr. Anshu Shrestha, will participate in recruitment and data collection efforts within its catchment areas. As a part of this effort, research staff will be mailing invitations to eligible individuals, identified through cancer registry data, to participate in the study towards the end of summer or fall of this year. Eligible individuals will include adults aged ≥18 from CRGC’s catchment areas who were diagnosed with pathologically confirmed metastatic colorectal cancer within 2-13 months of the date of initial contact and have no prior or simultaneously diagnosed cancer. Due to the need to recruit patients within 2-13 months of diagnosis, these individuals will be identified via early case ascertainment.

During the recruitment period (2024 – 2027), up to 2,500 eligible patients will be identified on a rolling basis and sent an initial mailing, with a goal to enroll 900 individuals in the study. Individuals who agree to participate will be asked to complete a baseline survey and three follow-up surveys at 4, 8, and 12 months after the date of the first survey completion. In appreciation of the time spent in participating in this study, participants will be provided gift cards of $40 for baseline survey participation and $15 for each follow-up survey. The THRIVE survey will ask questions about the participant’s colorectal cancer symptoms and side effects experienced, their day-to-day activities, experiences with cancer care, and other background information (such as sociodemographic information like race, ethnicity, education). Individuals interested in participating can complete the survey at their convenience and skip any questions they do not wish to answer. The follow-up surveys will ask similar questions to the first survey and allow researchers to assess changes in symptoms and experience overtime. A subset of participants will also be asked to complete a Medical Records Release Form. If they choose to participate in this portion of the study, it will involve providing the research team at CRGC with permission to access medical records related to their colorectal cancer care from facilities where they received their diagnosis and treatments. This will help us understand the treatment they received. 

The success of this study will greatly depend on how updated registry data is on colorectal cancer cases diagnosed at the time of early case ascertainment. Once again, we look for the support of hospital registrars in ensuring that recently diagnosed cases are added to the cancer registry database.  

Additional Registrar Resources from the College of American Pathologists (CAP): CAP Cancer Data Champions Webinar Series and CAP Podcasts

Cancer Data Champions Webinar Series - March 21, 2024: Finding, Organizing, and Using CAP eCP Data to Accelerate Cancer Research

Registration is free but it is required. Click here to register.

CAP Podcasts – also called CAPcasts have several sessions of interest specific to the cancer registry community. A small sampling of sessions that might be of interest to you:

October 13, 2023: Breast Cancer Awareness Month

October 20, 2023: How Pathologists Can Leverage AI to Improve Patient Care

November 14, 2023: Pancreatic Cancer Awareness Month

They can be found here: https://podcasts.apple.com/us/podcast/capcast-from-the-college-of-american-pathologists/id1279391140

Update for 2024, SB-344 Ken Maddy California Cancer Registry

Robert H. McLaughlin, JD, PhD

Special Program Advisor

Cancer Registry of Greater California

California’s statewide cancer registry statute has been revised to incorporate a set of instrumental changes through the passage of SB-344, Ken Maddy California Cancer Registry. As signed by the Governor and effective on January 1, 2024, the key changes of SB-344 document the regional composition of the state’s cancer registration program, clarify expectations of pathologists and pathology laboratories in regard to e-Path reporting, and adapt data access and release rules to better serve the research community by enabling the responsible deposit of data within federal and federally designated data repositories.

The first change is clarification of the structure of statewide cancer data collection using population-based regional cancer registries. Introduction of the word, “regional” recognizes the vital role of served by regional registries both at present and historically since the implementation of statewide cancer registration in California in 1988. (CA HSC Section 103885(a).)

Revisions in Section 3 clarify the source of e-Path reporting. The provision now reads, “A pathologist or pathology laboratory diagnosing a reportable case of cancer shall report cancer diagnoses to the department utilizing the College of American Pathologists cancer protocols or any other standardized format approved by the department.” (CA HSC Section 103885(d)(3)(A).) This revision reflects a practical understanding of the reporting workflow and the manner in which pathology laboratories may accommodate reporting on behalf of more than one associated pathologist. Also within this provision, revisions improve the statutory language regarding the potential inefficiencies of redundancy and non-compliance stemming from correctable deficiencies in reporting. As revised, the provision reads, “This paragraph shall not be interpreted to require a pathologist to submit the same pathology report to the department, regardless of format, more than once unless deemed necessary by the department or its authorized representative. If the department deems a pathologist noncompliant with this paragraph, the department shall notify the pathologist of the deficiencies and provide an opportunity to cure those deficiencies. The department shall not impose fines or other penalties solely based on a pathologist’s failure to comply with this paragraph.” (CA HSC Section 103885(d)(3)(E).)

In addition to these operational revisions, the revised statute includes new language that responds to the increasingly multi-institutional and collaborative nature of cancer research and population-based epidemiological studies more generally. These qualities of research have prompted the establishment of federal and federally designated data repositories. Such repositories offer greater efficiency in the use of federal research funds by supporting a broad range of secondary analyses as well enhancing the ability of researchers to confirm the integrity of data through replication and reproducibility of data, outcomes and results. Whereas the statute previously included a comprehensive bar to redisclosures by a researcher of cancer data, it now provides as follows: “Notwithstanding any other law, any disclosure authorized by this section shall include only the information necessary for the stated purpose of the requested disclosure, used for the approved purpose, and not be further disclosed, unless the original disclosure is for research that requires the researchers to participate in data sharing with federal or federally designated data repositories or with researchers under the direction and control of the originally approved data recipient who remains the researcher responsible for data security and integrity provided the data being disclosed does not contain individually identifiable data that could be reasonably used to identify or reidentify the data with an individual person.” (CA HSC Section 103885(g)(5).)

Finally, in a move indicative of the importance of cancer data to the reduction of the cancer burden in California, the final provision of the statute has been revised to drop reference to legislative intent and to simply and directly state that “The department, in establishing a system pursuant to this [law] shall maximize the use of available federal funds.” This change helps to secure the financial sustainability of our endeavor and benefits of equitable wellbeing for Californians that cancer registration and surveillance make possible.