Patient Directions: Where Should We Focus?
By now, you know that we had to temporarily shut down the International Patient Registry from new enrollment and data collection because our platform company closed down. We are in the process of analyzing the data we already have, and are now putting together a strategic plan to guide research efforts in the future.

Our guiding principle is that BJCSF's patient registry will always remain patient-centered and truly patient-driven. In order to do that, our study plans must be developed based on the issues that patients and caregivers care about the most.

Please complete this form and let us know if you have specific interests for future research efforts!

If you have questions, please contact Kaitlyn: kesposito@bobbyjonescsf.org
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Which of the following areas are the most important for us to focus in the next 5 years? (Select all that apply)

Please note: This question was written based on existing recommendations and the views of current patient registry participants.
What would you add? Let us know if you have specific interests for future research efforts!
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