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We are often told by our community that it is difficult to find information on clinical trials, and that the information around clinical trials can be difficult to interpret and understand if you don’t have a scientific or medical background. Even when information is found, the detail is complex and it’s hard to know where the trial is taking place, or whether or not you would be eligible to participate in it.
We formed a partnership with RareCan in the Autumn of 2023 with a view to improving access to clinical trial information for people with neuroendocrine cancer. This was brought to us by a member of the neuroendocrine community, Martin, who originally found RareCan while searching for information about what he could do to help himself and others who may find themselves in the same situation as him. His introduction has seen us make progress in a number of ways.
RareCan aims to support patients to find a clinical trial that may be appropriate and after a telephone call can provide patients with information to share with their medical teams, empowering them to take the lead when discussing clinical trial opportunities and what their options might be.
9 people with a neuroendocrine cancer diagnosis have joined the RareCan community, 4 participated in a screening conversation, and of these, 2 were found to have a potential match to a trial and have received reports highlighting access opportunities. These members can now take this information back to their clinicians when they next discuss their treatment options.
If you would like to get involved, you can visit their website and register for an account to have a call with a member of their team who can discuss potential trial possibilities with you. RareCan.com
