NSCIA Supports Free Public Access to NIH Research

The National Spinal Cord Injury Association (NSCIA) wholeheartedly supports enhanced public access to research information. Founded in 1948, the National Spinal Cord Injury Association is the nation's oldest and largest civilian organization dedicated to improving the quality of life for hundreds of thousands of Americans living with the results of spinal cord injury and disease (SCI/D) and their families.

This number grows by thirty newly-injured people each day. The Enhanced Public Access notice states that NIH is dedicated to improving the health of Americans by conducting and funding biomedical research that will help prevent, detect, treat and reduce the burdens of disease and disability. NSCIA is concerned with health policy that affects the lives of people with disabilities and their families.

For those who are newly injured and for those who continue to live with SCI/D, timely public access to accurate research information is critical. Studies show that people with disabilities spend more time on the Internet than their non-disabled counterparts. People with SCI/D and their families search for reliable medical data and applied research with the hope of enhancing their quality of life.

The NSCIA website and Resource Center receive thousands of inquiries from individuals, the media, professionals, and policy-makers requesting information about new forms of treatment for SCI/D and its symptoms - for new medicines, therapies and technology. Sometimes there is unreliable information that builds hopes and expectations.

Recently an article in "The National Review" cited non-embryonic stem cell studies that were resulting in significant increased movement for people with SCI. Unfortunately, some of the "research" noted was suspect: conducted using less than acceptable scientific practices.

While some individuals will always seek out therapies and treatment that do not meet approved medical standards, lack of timely public access to cutting edge, valid research magnifies this problem.

Certainly the results of taxpayer funded research should be readily and freely available to the public via the Internet.  

NSCIA also strongly encourages NIH to devote more of its research dollars to applied research. At NSCIA, we educate and empower survivors of spinal cord injury and disease to achieve and maintain the highest levels of independence, health and personal fulfillment. Results from applied research would assist survivors of SCI/D as well as those living with other disabilities and diseases to enhance the quality of their lives.

NSCIA works to raise awareness about spinal cord injury and disease through education. Our education programs are developed to address information and issues important to our constituency, policy makers, the general public, and the media, and including injury prevention, improvements in medical, rehabilitative and supportive services, research. We look forward to informing those we serve that enhanced public access to research information is available at NIH.