COVID Registry Gets Its Start on Twitter

-We should gather data on patients with cancer and COVID-19.

-How sick do they get?

-Great idea to track this, maybe a registry?

This was March 15 – just two weeks after the first U.S. death from COVID-19 was reported near Seattle. In just a few hours, there was a beta survey and a project name – the COVID-19 and Cancer Consortium (CCC19). At least partly thanks to Twitter, the test survey was seen by investigators across the country. They tried it out and provided feedback.

-By March 17, a final survey went online.

-By March 20, CCC19 had a website and a Twitter account.

-By March 25, it had an official registered hashtag - #CCCD19.

-By March 27, the registry was featured in an article and a podcast in the ASCO Daily News, and the team published a manifesto in the ASCO Post.

Today, CCC19 is the cancer research project of the moment, already cited in a dozen news stories. The concept is brilliant in its simplicity: Use an online form to quickly collect de-identified, HIPAA-exempt data on cancer patients with COVID-19. The online survey was created at Vanderbilt University Medical Center on its REDCap web survey platform and approved by its IRB. It was then approved at the Fred Hutchinson Cancer Research Center and a number of other cancer centers and hospitals. The survey collects patient demographics, clinicopathologic factors, coronavirus diagnosis and treatment details, and health care provider information. Patients, and their outcomes, can be tracked over time.

Results will fill a critical void. There is little published data on the impact of COVID-19 on patients with cancer. Only one study – of 18 patients from Wuhan, China – has compared them with patients without cancer, finding that those with neoplastic diseases have a higher risk of hospitalization and death. Meanwhile, there is little evidenced-based guidance on how to best treat people with both cancer and COVID-19.

That’s why over 50 cancer centers, universities, and research institutes across the U.S. have already signed on as CCC19 participants, with interest in joining coming from institutions in Sweden, Germany, Italy, and Spain. SWOG Executive Officer Dr. Gary Lyman, a founder of CCC19, said the project has spread almost as fast as the virus.

“We have a global crisis, and we also have a global community of researchers connected by the internet and social media,” Dr. Lyman says. “This created an enormous challenge but also an enormous opportunity to get consistent, rigorous data very quickly that we can rapidly share for research.”

The CCC19 steering committee is studded with investigators active in ASCO, AACR, and our own National Clinical Trials Network. Dr. Lyman serves as CCC19 principal investigator at Fred Hutch, and serves on the steering committee along with Drs. Nicole Kuderer and Petros Grivas from Fred Hutch, Dr. Jeremy Warner, the chair, and Dr. Brian Rini, both of Vanderbilt, Mike Thompson of Aurora Health Care, Gilberto Lopes of University of Miami, Toni Choueiri of Harvard Medical School, Dimpy Shah of University of Texas Health San Antonio, and Corrie Painter of the Broad Institute.

“This pandemic shows us that science and medicine are global and digital,” Dr. Lyman says. “Everything right now is social, immediate, connected. We’re all in this together. And we’re never going back.”