What is ALS?

• ALS is also called Lou Gehrig’s Disease or Amyotrophic Lateral Sclerosis
• It is a degeneration of motor nerve cells in the brain and spinal column
• With disease progression, muscles become weak and small (atrophic)
• Between 20 000 and 30 000 Americans are living with ALS
• Most people who get ALS are between 40 and 70 years of age, but one can get it as young as 20 or as old as 90

About ALS Connection:

• ALS Connection is a patient driven ALS registry to collect data from ALS patients in North America.
• ALS Connection is coordinated by Dr. Robert Miller, Dr. Jonathan Katz and Dr. Catherine Madison, all of them physicians who treat ALS patients in a multidisciplinary clinic (The Forbes Norris MDA/ALS Research Center) in San Francisco, Ca.
• Project Manager for this website is Stacey Champion.
• The project receives funding from the Muscular Dystrophy Association (MDA).
• Programming staff of the Department of Epidemiology, University of California, San Francisco (UCSF) developed the data base and website and monitors them to ensure complete confidentiality of the data.
• The scientific advisory board includes: Dr. Stanley Appel, Dr. Walter Bradley, Dr. Robert Miller, Dr. Hiroshi Mitsumoto, Dr. Stephen Ringel, Dr. Tim Miller and Dan Moore, Ph.D.

The purpose of ALS Connection:

• Identify opportunities to improve the quality of care for patients with ALS
• Learn more about the disease evolution
• Obtain long-term follow up data and information about quality of life as well as outcome of patients with ALS
• Provide patients, caregivers and healthcare providers with information about ALS and ALS related topics
• Provide data for ALS research

Who is eligible?

Any person who has been diagnosed with ALS by a physician can enroll into this registry.

The information you provide in the ALS registry will be used to evaluate variations in patient care, adherence to standards of care and also to help foster ALS research. An additional focus of this website will be to educate participating patients and visitors to this site about ongoing ALS research.

To begin, please register with ALS Connection. As part of the registration process you will be asked to read a consent form as well as a HIPAA form. Please read these forms carefully. If you have any questions please contact the coordinating site listed below.

If you agree to participate in the ALS registry, you will receive a confirmation email from the coordinating center acknowledging receipt of your informed consent and HIPAA forms.  You will be issued a participant ID # and given an opportunity to enter your data into the ALS registry.  If you do not complete the survey you will be able to return to finish at another time by logging in using your email address and password.  Once you complete your survey, you will be contacted every 6 months and reminded to complete a follow up survey about your current health status.

If you do not get a confirmation e-mail within 12 hours of signing in then we had trouble reaching you.  Please call 415-600-3938 to ensure that we have received your data.

If you have any questions about ALS Connection, please contact:
Stacey Champion at ChampiS@cpmcri.org or
Giovanna Kushner at kushneg@sutterhealth.org