In response to a call by the medical community for guidelines on the use of medical cannabis in accordance with new state government regulations, Colorado State University’s Institute of Cannabis Research will launch a national, medical cannabis patient data registry.
The development of the registry has been led by CSU-Pueblo faculty researchers and an off-campus collaborator. The institute is funded by the state of Colorado.
According to institute officials, national estimates suggest that more than 1 million U.S. citizens legally consume cannabis to relieve symptoms from such diseases as multiple sclerosis, HIV, cancer or epilepsy.
“We must improve our understanding of the real-world use of medical cannabis and to make these data available to other researchers and collaborators,” principal investigator Dr. Sue Sisley, MD, president, Scottsdale (Ariz.) Research Institute said in a statement.
Sisley also is a former member of the steering committee of the CSU-Pueblo Institute of Cannabis Research and collaborator on the development of the registry.
“This is one of the first registries of cannabis users to be reviewed and approved by a university Institutional Review Board which will allow it to stimulate research and to broaden our knowledge of this field. The registry will eventually help us better understand the possible risks and benefits related to the use of this product.”
The CSU-Pueblo Institutional Review Board provides oversight to research studies involving human subjects at CSU-Pueblo.
Institute officials said the researchers hope to engage physicians and their patients to submit data as participants in the research — an approach that could be adapted to study the safety and effectiveness of other drugs over the long term.
The data shared with research collaborators will not have any identifiable patient information to protect patient privacy. The registry will hopefully gather data from thousands of patients. The platform went life Monday; utilizing state of the art HIPAA compliant digital technology.
“This registry will allow researchers at our Institute as well as nationwide, to have access to a much-needed repository of anonymous data for the study of the impacts of cannabis in medical use,” said Chad Kinney, director of the Institute of Cannabis Research.
“We at CSU-Pueblo are pleased to be one the first institutions to make this research resource available.”
ValidCare’s platform and team are proven in both traditional healthcare and the medical cannabis industry with over 750,000 patient records managed over the past three years. Their unique business model allows researchers, providers and industry to collaborate with integrity on examining cannabis efficacy.
“We are excited to work with the Institute for Cannabis Research and play a meaningful role in helping the industry validate the effects of medical cannabis,” said Patrick McCarthy, CEO of ValidCare.