We're encouraging skull base patients in the United States to participate in an important project underway at Yale School of Medicine, which could eventually be valuable for assessing treatment effectiveness in clinical trials and potentially aid in getting new chordoma therapies approved.
What is it? A team at Yale has developed software that can create 3D models of tumors from MRI images. These types of 3D images can help doctors and researchers better visualize the size and shape of tumors as well as the surrounding structures and tissue. The team has used this tool for a couple of other rare tumors and would now like to include chordoma in their work.
Why is this important? One possible use for this type of software is to determine how chordoma tumors change during drug therapy treatments. With the usual 2D images, it can sometimes be hard to tell whether or how much a chordoma has shrunk during treatment. 3D images can give a more complete representation because the entire size and shape of the tumor can be analyzed. This could ultimately be a great tool for use in clinical trials to help show the results of the treatment, which is necessary for getting drugs approved by the FDA and other regulatory agencies.
Who can participate? Right now the team is recruiting skull base patients in the United States only. You will need to have digital access to your MRI images (for example, in MyChart or on a CD).
What will you be asked to do? Someone from the team at Yale will schedule a phone call with you. They will tell you more about the study, ask you a few questions, and then, if you agree to participate, they will walk you through the process of uploading your images to a OneDrive folder. (You do not have to mail your CDs to them.) This should take about 45 minutes. Any identifying information you share will only be accessible to the study team and will be kept confidential.
If you're interested in participating, please email the team at Yale and they will be in touch. You can change your mind about participating at any time.
Thank you for considering this important opportunity! If you have any questions, please don’t hesitate to contact us.