Dina Scholtz
10-20-2006, 02:18 PM
ALSconnection at www.alsconnection.org is a patient driven registry that aims to collect data from persons with ALS (PALS). It is coordinated by Drs. Robert Miller, Jonathan Katz and Catherine Madison from the Forbes Norris MDA / ALS Research Center in San Francisco, California, a world leader in clinical ALS research.
The purposes are to learn more about the origin of ALS and to improve quality of care for people with this condition. Information provided to the registry will be used to evaluate variations in patient care and adherence to standards of care and to help foster ALS research.
We especially hope to learn about PALS who are not seen in larger ALS centers where data can be collected at the point of care. Through the internet we hope to reach more PALS in different regions.
We also hope to learn about the long-term experience with this disease. This will help us understand how to intervene more effectively. Therefore PALS who enter their data will be asked to update their data every 6 months.
We welcome your feedback and concerns about our project. While you are on-line we hope you will find valuable information on our site. We intend to update the contents and continue posting articles about different topics relevant to ALS. If there is a topic you would like to hear about, please let us know at scholtd@sutterhealth.org.
The ALSconnection team
www.alsconnection.org
The purposes are to learn more about the origin of ALS and to improve quality of care for people with this condition. Information provided to the registry will be used to evaluate variations in patient care and adherence to standards of care and to help foster ALS research.
We especially hope to learn about PALS who are not seen in larger ALS centers where data can be collected at the point of care. Through the internet we hope to reach more PALS in different regions.
We also hope to learn about the long-term experience with this disease. This will help us understand how to intervene more effectively. Therefore PALS who enter their data will be asked to update their data every 6 months.
We welcome your feedback and concerns about our project. While you are on-line we hope you will find valuable information on our site. We intend to update the contents and continue posting articles about different topics relevant to ALS. If there is a topic you would like to hear about, please let us know at scholtd@sutterhealth.org.
The ALSconnection team
www.alsconnection.org