Philly's Jefferson U. seeks 100,000 marijuana patients from across the U.S. for patient database

Researchers at Thomas Jefferson University announced their intention Friday to build what they called the world’s largest patient database for medical marijuana, which will collect health information from over 100,000 users.

The national project — called the MMJ.org Initiative — will launch this summer and expects to reach its goal by the end of the year. Patients in marijuana-legal states will be recruited at dispensaries and through their physicians, said Charles Pollack, director of the Lambert Center for the Study of Medicinal Cannabis and Hemp at Jefferson.

“There are millions of patients using medical cannabis,” said Pollack. “Not all will be interested in participating, but 100,000 is our initial goal. It’s a scale that no one has ever dreamed of. If we get enough patients, then we can focus research on specific illnesses.”

The Lambert Center is partnering with Boston-based startup ioVita, which will build the online platform to enroll patients.

Volunteer patients will be asked to keep health diaries to document their ailments and their use of cannabis medicines. They will not be paid and they will not receive any cannabis product for participating.

“Patients can decide what they want to do with the data,” said Alex Frost, ioVita’s founder. “They can keep it locked up, but they might choose to share it with researchers in an ethically approved research project.” Frost, a tech entrepreneur, said patients can also share information with their health-care teams or with peers in a patient community.

Marcus Bachhuber, a physician and cannabis researcher at Albert Einstein College of Medicine in New York, said the MMJ.org Initiative “could be an extremely effective project.”

Bachhuber was lead author of a paper published in March that found that 85 percent of medical marijuana patients in New York would “definitely or probably enroll” in a research study if asked.

“They’re really enthusiastic about contributing knowledge on this topic, because they feel that it’s understudied. When we put out that survey, we got 500 responses in one day,” Bachhuber said. “That’s really a lot.”

Bachhuber said the Jefferson marijuana patient database would be the largest he knows of.

Canadian researcher Philippe Lucas has assembled a database of 2,032 patients for the Tilray Observational Study of medical marijuana. Lucas said the first details from the study, done in conjunction with the Cleveland Clinic, will report on the efficacy of the drug on migraines and headaches.

Pollack, who is also an emergency room physician at Jefferson, said the MMJ.org Initiative will also include educational resources. “If they choose, they can be connected to other people who use marijuana for ‘X.’ They can opt in for as many or as few of the features they want.”

Because the federal government has considered all forms of marijuana illegal for decades, there have been only about a half-dozen clinical trials on the drug.

Twenty-nine states have passed laws allowing cannabis to be used to treat some medical conditions. But the U.S. Food and Drug Administration remains adamant that marijuana has no medicinal value and considers it to be on par with heroin and LSD.  With few exceptions, research institutions run the risk of losing federal funding — grants along with Medicaid and Medicare dollars — if they investigate marijuana’s effects on humans.

On Thursday, the House Appropriations Committee voted to continue blocking the U.S. Department of Justice from interfering in state medical marijuana laws.

Until the federal agency changes its stance on the drug, randomized clinical trials — the gold standard of research — are nearly impossible. In the meantime, researchers are left to collect data and analyze it.  Pennsylvania’s state-sanctioned research program, expected to launch early next year, will work in a similar manner, gathering data from patients using medical marijuana.

“Patients are doing self-experimentation,” said Frost.  Though cannabis dispensaries recommend different strains and dosages for specific illnesses, information is not standardized. “If you allow them to share their results with each other and with scientists, they can drive the research and move this forward.”