New ALS Registry for Research

| RESEARCH NEWS

According to www.healthdatamanagement.com, the Centers for Disease Control and Prevention have recently published a notice outlining steps to register individuals for listing in the new Amyotrophic Lateral Sclerosis Registry, authorized under legislation signed in 2008.

According to the notice, “The purpose of the registry is to: (1) better describe the incidence and prevalence of ALS in the United States; (2) examine appropriate factors, such as environmental and occupational, that might be associated with the disease; (3) better outline key demographic factors (such as age, race or ethnicity, gender, and family history of individuals who are diagnosed with the disease) associated with the disease; and (4) better examine the connection between ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS. The registry will collect personal health information that may provide a basis for further scientific studies of potential risks for developing ALS.”

Registration and the gathering of additional information will be done via a Web site. The CDC Agency for Toxic Substances and Disease Registry, Amyotrophic Lateral Sclerosis Association and Muscular Dystrophy Association will advertise the existence of the site. There is no cost to individuals to register.

The notice was published Jan. 27 in the Federal Register, at gpoaccess.gov/fr/index.html