"Our partnership with the North American Spinal Cord Injury Consortium is instrumental to ANEUVO as we seek to better understand the experience of those living with a spinal cord injury. Through our collaborative work with NASCIC, we are more prepared and better informed to develop meaningful technology, research, and innovation for the SCI community."
What is Community Engagement?
Intentional, meaningful interactions with people who have lived experience that provide opportunities for mutual learning and effective collaborations.
Source: FDA Guidance
Did You Know?
60%
Percent of protocols requiring one or more amendments with 20% due to design flaws and recruitment.
32%
The trial participants who heard about a trial from their healthcare provider. Most are from community sources.
37%
The number of clinical trial sites that under-enroll participants with 11% never enrolling one.
30%
Percent of clinical trial participants who drop out before becoming evaluated.
This underscores the importance of involving patients in the design of clinical studies as well as gaining their input and preferences throughout the development pathway.
How We Can Help
Understanding the Patient Journey
Gain the perspective of what a person with lived experience will encounter: whether it is a clinical trial, interface design or intervention delivery. These can have implications on retention, design amendments, as well as outcome measures.
Targeted Training
New to SCI? It is not as straight forward as you may think. We can help you design a program to help your team go beyond the basics of spinal cord injury and understand the lens of living with the condition and the wider community.
Messaging
Are you asking the right questions at the right time in the right language? Your communications with the community can be critical to your success.
Community Connection
NASCIC is a collaborative consortium. Our referral network can help you to get connected to the right people in the SCI Community.
What Our Partners Say
"The collaboration with NASCIC in preparation of our first clinical study protocol was exemplary to obtain direct input and feedback from patients with SCI-lived experience. The NASCIC team was very responsive and extraordinary collaborative – it was a pleasure to work with NASCIC."
"NASCIC was a tremendous partner during the design and implementation of the Community Advisory Board at Precision Neuroscience. They have extensive connections in the SCI community and were able to spread the word about the Board's open positions quickly and efficiently. Jen and her team helped educate us on best practices for screening the individual applicants and on how to structure our communications with them once each member was chosen. NASCIC provided essential constructive feedback to the Precision team after each Board meeting, giving advice on how to balance the amount of time spent educating vs learning from the board's lived experience with SCI and how our technology could most have a positive impact. NASCIC was professional and a pleasure to work with. We highly recommend their services!"