ISPOR & FDA are hosting a summit on Patient-Preference Information

ISPOR-FDA Summit 2020: Using Patient-Preference Information (PPI), in Medical Device Regulatory Decisions: Benefit-Risk and Beyond. This summit is hosted by the U.S. Food and Drug Administration’s(FDA), Center for Devices and Radiologic Health (CDRH), and is co-sponsored by the International Society of Pharmacoeconomics & Outcome Research (ISPOR). It is a one-day event on March 31, 2020 on the FDA White Oak Campus. In-person registration is free and the meeting will be webcasted

Here is the link: :

Prior to the workshop is a webinar that talks about what PPI is. We encourage you and your members to tune in.

Attend to learn more about Patient Preference Information.

U.S. FDA Public Meeting – Communication About the Safety of Medical Devices

The U.S. Food and Drug Administration’s Public Meeting – Communication About the Safety of Medical Devices on April 1, 2020. Please be sure to register to attend the meeting by March 18, 2020.

During this meeting, they will share the FDA’s current practices about medical device safety communications, including development, content, and format. During the public meeting, attendees will hear from various stakeholders—including patients, caregivers, health care providers, regulated industry, and the media—about how we can improve our safety communications to assure they receive the information they need in a timely, clear, and consistent manner.

Follow this link to register and read more on the event docket:

New Funding Opportunity Focused on SCI

DARPA (Defense Advanced Research Projects Agency in the USA) has announced a new funding opportunity focused on spinal cord injury – Bridging the Gap Plus.  In a nutshell, this competitive program is focused on developing new interventions that bridge acute injury, regeneration, and chronic functional restoration.

That’s a lofty goal considering that our field is littered with past failures of these individual strategies.  Some things are a little different with this program however.

  • It is heavily engineering oriented.  Each proposal has to build 2 implantable devices – one around reducing the effects of acute injury and one around restoring multiple functions in the chronic setting.
  • The proposed interventions are required to fit in the FDA regulatory pathway and investigators must engage with the FDA early.  It is expected that a person with SCI will be implanted by the 5th year of each project under FDA oversight.
  • They are interested in the SCI consumer perspective.  Barry Munro, NASCIC Treasurer, was invited to speak at the Proposer’s Day meeting on November 5th.  The audience was 130+ people considering submitting proposals.  Barry told them about the value of considering the end user at the beginning.  Including lived experience on the research team only strengthens the end result.  He also told them that NASCIC is here to partner with them to enhance their proposals.

Full proposals are due by January 22, 2020.  We will keep you posted on NASCIC’s involvement and which proposals end up being funded.

Patron members sought for project engagement

NASCIC receives several projects requesting input or involvement from people living with SCI or their caregivers and family. If you are interested in participating in these projects, please complete this form. As we receive approved project requests, we will contact you with these opportunities. Thank you for your participation in our SCI community.

SCI 2020: Launching a Decade for Disruption in Spinal Cord Injury Research

Many throughout our community have heard about the upcoming meeting “SCI 2020: Launching a Decade for Disruption in Spinal Cord Injury Research” being hosted by the National Institutes of Health (NIH) February 12-13, 2019.  The Executive Council of NASCIC has been invited to speak in one session of this meeting.

At this meeting, we are trying to represent the SCI community to the research field as people living with SCI (and family/caregivers), as well as our respective organizations. To inform our session we sought input through a survey and we will relay the summary responses of the 1800 people who informed us of their opinions through that survey.  Another venue is to support the open letter endParalysis has posted to the NIH conference organizers.  Our overarching common goal is that we all want the results of research to truly improve our lives now.

We encourage people to reach out to the contacts at NIH/NINDS who are listed at this link: to share your opinions.

We also encourage people to attend the live streaming and archived video of the meeting that will be available at:

NASCIC will be creating a summary report of the meeting, the survey results, and suggestions of next steps for the future.  We welcome feedback from our members.  Look for this in March.

Opportunity to Provide Input on SCI Research Funding

We have some great news! The NASCIC Executive Council have been asked by the National Institutes of Health (NIH) to provide input from our spinal cord injured community to help chart the future of funding for spinal cord injury (SCI) research in the next decade.

We ask that if you have an SCI or are a family member or caregiver of someone with an SCI that you take the time to fill out our survey –

This is a great opportunity for all of us to have a voice!

We want to hear from individuals with spinal cord injury!

Nerve Stimulation for Neurogenic Bladder and Bowel Dysfunction Survey

Who we are: We are a group of individuals from clinical, research, industry, and SCI advocacy organizations who have designed a survey that we believe is of high importance to the SCI community.

We need your help: We are conducting a survey and the purpose is to provide individuals with spinal cord injury (SCI) with a voice to help the research community understand your needs and priorities for managing your bladder and bowel functions.

Why this survey matters: Your feedback will be used to directly affect research and development priorities for improving bladder and bowel care for people living with SCI.

As a person living with SCI, your input is critical to finding real solutions to bladder and bowel management issues that you face on a daily basis. We want to understand your needs and priorities for improving your bladder and bowel functions, and understand your opinions about using nerve stimulation technologies to achieve these goals.

This survey will take approximately 20 minutes to complete. Please follow the link below to complete the survey and enter for a chance to win a $50 Amazon gift card!

Click here to take the survey!