The study kick-off meeting was held October 21st at the Hilton Hotel in Salt Lake City.
The meeting had a twofold emphasis. The first component of the meeting was to educate. Educational components of the meeting included: educating study personnel about spinal cord injury and bladder management, the study objectives, and education for all about living with spinal cord injury from our patient stakeholder: research partners.
A group of investigators, clinician and patient stakeholders, and research staff met the night before the meeting to informally get to know one another.
The following day there was close to 8 hours of activity.
We then talked very specifically about the PCORI grant and the mechanics of collecting data and enrolling patients. We decided against enrollment of patients without an interview on the phone, we talked about specific questionnaires we would use for the study within the SCI-QoL question panels. We also discussed the study flow and how to tailor the study questions with shell tables for publication in medical journals.
By and large we heard that the meeting was meaningful and educational for all of the participants. Many of the study personnel remarked on how important it was to hear from the patient stakeholder: research partners about living with spinal cord injury.
