NARCOMS’ focus is creating and maintaining a database of individuals’ experience with MS and making that information available, both to researchers who can use it to help you and others and for studies conducted by experts within the NARCOMS consortium.
The Vision of the NARCOMS Global Patient Registry is to use the power of patient experience to improve clinical care and quality of life for persons with multiple sclerosis and their families by developing collaboration among centers of excellence and researchers in MS throughout the world.
Our Goals:
1) Facilitate a confidential way for patients to supply valuable information to researchers about their course of disease that may lead to more effective treatments and care for people living with MS, while reducing the time and cost of conducting studies.
1) Facilitate a confidential way for patients to supply valuable information to researchers about their course of disease that may lead to more effective treatments and care for people living with MS, while reducing the time and cost of conducting studies.
2) Provide a worldwide research resource for people living with multiple sclerosis so they can benefit from the knowledge gained and share in it as soon as it becomes available.
3) Develop new collaborations between researchers, patients, and healthcare providers to:
* Increase knowledge of effective treatments, the amount of peer reviewed publications, and the quality of healthcare services
* Raise awareness and understanding of MS
* Create a computerized database representing at least 10% of the MS population in the US that tracks changes over time and is updated with semi-annual participant surveys
|
Visit our MS Learning Channel on YouTube: http://www.youtube.com/msviewsandnews