Nearly a decade ago, Laura Crane joined a clinical trial for her cancer. Now, she is healthy, and looking back, she wishes that finding a study was easier.Jason McKenzie/The Globe and Mail
When Laura Crane was diagnosed with Stage 3 melanoma a decade ago, searching for the right clinical trial felt like “enrolling in a heavy university course” at the worst possible moment.
The Thunder Bay teacher, now 47, burrowed down Google rabbit holes about skin-cancer research, trying to understand her options. She turned to her aunt, a physician in New Mexico, for guidance, and asked other doctors, friends and acquaintances what they knew about getting spots in trials.
Ultimately, the friend of a cousin in Los Angeles told Ms. Crane about a doctor at Sunnybrook Health Sciences Centre in Toronto. The doctor was preparing to open a Canadian site of a trial for an immunotherapy drug called pembrolizumab, now sold under the brand name Keytruda.
Ms. Crane became the first Canadian to join the trial. Nearly 10 years later, she’s cancer-free and feeling well. But looking back, she wishes that finding a study of an experimental medicine had been less of a hardship.
That’s why she was happy to hear that the Canadian Cancer Society and Q-CROC, the Quebec – Clinical Research Organization in Cancer, are formally launching a new website on Monday for adult Canadian cancer patients to find and join the right trials.
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Sandra Krueckl, the executive vice-president of mission, information and support services at the Canadian Cancer Society (CCS), said now is an important moment for Canada to have its own patient-friendly doorway to trying experimental medicines.
One of the main services that researchers around the world use to register their studies, clinicaltrials.gov, is being affected by a government shutdown in the United States that began Oct. 1.
The site is currently topped with a notice that warns it may not be up to date “because of a lapse in government funding.”
“We certainly feel that what we need is a made-in-Canada solution,” Dr. Krueckl said, “one where we are building the relationships with industry and academic partners and ensuring that we’ve got that information that is accurate and up to date for the Canadian population.”
The new bilingual database of trials, cancertrialscanada.ca, which officially launches on Monday, allows patients to search for trials by cancer type. It contains details about trial eligibility, treatment type, location and trial-site contact information.
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About 80 per cent of the information originally comes from clinicaltrials.gov, Dr. Krueckl said.
“For the remaining 20 per cent, we have a dedicated staff who will review records, contact trial centres and fill in any missing details, so that what we have is an accurate, comprehensive and also a patient-oriented source of information,” she added.
The CCS also has a helpline to aid patients in their search.
Canada had a similar online service in the past, run by the federally funded Canadian Partnership Against Cancer. Ms. Crane doesn’t recall coming across it during her search for a trial in 2016, when she was recovering from surgery and raising two young children, although she searched so many websites she can’t be certain.
It shut down the site in 2023 in preparation for handing off the work to the non-profit Canadian Cancer Society, according to Craig Earle, chief executive officer of CPAC.
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CPAC provided $440,000 to CCS to support development of the new website, he added by e-mail.
Lucie D’Amours, the executive director of Q-CROC, the other partner in operating the site, said she hopes the new service saves cancer patients from relying on “Dr. Google” to seek clinical trials. The new site expands upon a trial recruitment platform that Q-CROC operates in Quebec.
The CCS commissioned an Angus Reid survey earlier this year that underscored how little Canadians know about clinical trials. More than half of Canadians who had no personal connection to cancer had never heard of them, according to the online survey of 2,044 Canadians conducted last January.
Ms. Crane recently looked back through her e-mails from the period in 2016 when she and her husband, Jon, were hunting for clinical trials. It reminded her how distressing it was to navigate research material on her own, to be immersed in scary statistics about melanoma.
“It’s easier for me now, but back then, it was really hard,” she said. “So to have all this done for people, it’s just one less upsetting thing to have to try to get through.”