Other Efforts

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While CCC19 was one of the first registry efforts focused on collecting data on patients with COVID-19 and cancer, we are not alone. On this page we have summarized the other registry efforts that we are aware of, and have provided links to their websites. We encourage reports to multiple registries although we also recognize that these reports take time and can lead to duplication of efforts.

Note: Duplicative case entry is a legitimate concern; the CCC19 registry survey instrument asks respondents to report this upon case entry. Please review this editorial in JAMA published in March 2020 regarding the concern of duplicative case entry: Editorial Concern—Possible Reporting of the Same Patients With COVID-19 in Different Reports

From ACS: "The American College of Surgeons (ACS) has developed the ACS COVID-19  Registry, which is now available to all hospitals seeking to capture meaningful data about the COVID-19 patients they treat. The overarching priority of this registry is to collect important clinical patient data for a disease about which little is known."

Inclusion: Hospitalized COVID-19 patients who did not undergo surgery as well as COVID-19 patients who did

Study Type: All hospitals can contribute. Unclear study design from website

Their project can be accessed here: ACS COVID19 Patient Registry

From ASCO: "The ASCO Registry aims to help the cancer community learn more about the  patterns of symptoms and severity of COVID-19 among patients with  cancer, as well as how COVID-19 is impacting the delivery of cancer care and patient outcomes. The ASCO Registry is designed to collect both baseline and follow-up data on how the virus impacts cancer care and cancer patient outcomes during the COVID-19 pandemic and into 2021."

Inclusion: Patients with cancer and patients who are cancer-free receiving adjuvant cancer therapy within a year of cancer surgery, including patients receiving hormone-only adjuvant therapy and patients receiving supportive care only

Study Type: Participation required. IRB Exempt with limited patient identifying data, including home zip code, date of birth

Their project can be accessed here: ASCO COVID19 Registry

From ASH: "The ASH Research Collaborative’s Data Hub launched the COVID-19  Registry and is currently capturing data on people who test positive for COVID-19 and have been or are currently being treated for hematologic malignancy. As data are received, near real-time observational data summaries will be reported for clinicians on the front line of the  COVID-19 pandemic."

Inclusion: Malignant hematology patients, regardless of recovery or active treatment status

Study Type: Anybody can report a case. De-identified non-human-subjects data "will not be collected for research purposes"

Their project can be accessed here: ASH RC COVID19 Registry

CIBMTR aims to collect detailed data regarding the diagnosis, treatment, and outcomes of COVID-19 infections in blood and bone marrow transplant recipients.

Inclusion: Any patient being reported to CIBMTR

Study Type: Mandated reporting with additional questions added to study forms

Their project can be accessed here: CIBMTR COVID19 Registry

COVID-HEME is a peer-to-peer forum for physicians about the care  of patients with hematologic malignancies during the COVID-19 pandemic. The goal of this collaborative platform is to improve and accelerate the  knowledge and experience of physicians to optimize the management of  patients during the pandemic. This project can be accessed here: https://lymphomahub.com/medical-information/covid-heme-forum-supports-hematologists-during-covid-19-pandemic

Inclusion: N/A

Study Type: peer-to-peer forum

Global lung cancer related effort being led by Drs. Leora Horn (Vanderbilt-Ingram Cancer Center) and Marina Garassino (National Cancer Institute of Milan). 

Inclusion: Thoracic cancers

Study Type: Center-based. Send an email to Jennifer Whisenant for more details on how to get involved: j.whisenant@vumc.org

From the website: "Our objective is to identify and learn from every case of COVID-19 in cancer patients in the UK through comprehensive reporting. This disease-specific national public health response is the first phase of a broader national coronavirus disease response initiated by NHS doctors on the ground."

Inclusion: Any patient with cancer in the UK with COVID-19

Study Type: Not research and therefore does not require NHS Ethics or Research and Development Approval.

Their project can be accessed here: https://ukcoronaviruscancermonitoring.com/

From the website: "The NCI COVID-19 in Cancer Patients Study, or NCCAPS, is a natural history study of COVID-19 in people with cancer. In a natural history study,  researchers follow people and collect medical and other information  about them over time to learn more about how a disease and its symptoms  develop and change. Diagnosis and treatment of a disease are not part of  natural history studies. The knowledge gained through this study will  help doctors better manage treatment for people with cancer and COVID-19  in the future.

As part of the NCCAPS study, researchers will collect blood samples,  medical information, and medical images from 2,000 people with cancer  who also have COVID-19. Each person will be followed for up to 2 years to help doctors understand how cancer affects COVID-19 and COVID-19  affects cancer.."

Inclusion: Adults who are receiving treatment for cancer and are waiting for SARS-CoV-2 test results or who have COVID-19 now 

Study Type: Not research and therefore does not require NHS Ethics or Research and Development Approval.

Their project can be accessed here: https://www.cancer.gov/research/key-initiatives/covid-19/coronavirus-research-initiatives/nccaps

From the website: "ESMO has launched an international collaborative project, the  ESMO-CoCARE Registry, to quickly gather data and information from  healthcare professionals about treatment approaches specifically focusing on the impact of SARS-CoV-2 on cancer patients who are suspected or confirmed to have the novel coronavirus  disease (COVID19). Pooling real-world data will make it possible  to rapidly accumulate knowledge, which will allow  to disseminate  information and guidance for  patients. Ultimately the project aims  to propose approaches to mitigate the risks related to COVID-19 in cancer patients. The survey is comprised of several parts,  including patient demographics, COVID-19 and cancer diagnosis and  treatment, and the evolution of both diseases."

Inclusion: N/A

Study Type:  Registry-based. Send an email to  esmococare@esmo.org  for more details on how to get involved 

Their project can be accessed here: https://www.esmo.org/covid-19-and-cancer/collaborating-on-registries-studies-and-surveys/esmo-cocare-registry

Reboot Rx is an AI-powered nonprofit startup with a mission of enabling cancer patients to access new and affordable treatments faster by finding ways to repurpose already existing generic drugs for cancer care. Reboot Rx leveraged its domain expertise and AI technology to launch the Reboot: COVID-Cancer Project, a free, publicly accessible resource containing aggregated and synthesized information specifically on COVID-19 and cancer. The goal of the project is to accelerate research and inform decisions on how to best manage cancer patients who contract COVID-19. 

This project can be accessed here: https://rebootrx.org/covid-cancer