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Kick-off meeting

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.

Dinner at Spencers
The PCORI Team met at Spencers to get to know each other

Getting to know eachother

A group of investigators, clinician and patient stakeholders, and research staff met the night before the meeting to informally get to know one another.

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Lectures and talks

The following day there was close to 8 hours of activity.


Historical Management of Neurogenic Bladder
Dr. John Stoffel
New Directions in SCI Management
Dr. Jeffery Rosenbluth
Development of Patient Reported Outcomes Measures
Dr. Blayne Welk
PCORI Grant – Mechanics and Objectives
Dr. Jeremy Myers


A Personal History of Advocacy
Ms. Elizabeth Fetter
Living with Spinal Cord Injury
Mr. Jason Hall

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.