State-Metro ALS Surveillance
ATSDR is funding state and metropolitan area-based surveillance projects to support the National ALS Registry.
Selected state and metropolitan areas are conducting ALS surveillance projects to:
- Assist ATSDR in evaluating the completeness of the National ALS Registry.
- Obtain reliable and timely information on the incidence and prevalence of ALS.
- Better describe the age, sex, race and other characteristics of persons with ALS (PALS).
Methods
State and metropolitan areas will contact neurologists to actively report persons with ALS.
State and metropolitan areas were selected to over-represent minority populations because of concerns that these groups might be missing from the National ALS Registry.
- Participating States: Florida, New Jersey and Texas.
- Participating Metropolitan Areas: Atlanta, Chicago, Detroit, Las Vegas, Los Angeles, New Jersey, Philadelphia and San Francisco.
Recruitment of Neurologists
To identify neurologists who diagnose or provide care for PALS:
- Lists of state/metro neurologists were obtained from outside vendors, state licensing boards, and others.
- Neurologists specializing in pediatric neurology or neurosurgery in urban areas and those no longer practicing in the area (e.g., moved or deceased) were removed from the list.
- Letters and phone calls were made to the neurologists to determine if they diagnosed or treated PALS.
Every neurologist who has diagnosed or provided care to a person with ALS from January 1, 2009 – December 31, 2011 is being asked to report.
Data Collection Plans
- The neurologist will complete a brief abstraction form, which includes information on demographics, data of diagnosis, and El Escorial Criteria, on each person with ALS.
- A more detailed Medical Records Verification form will be completed on up to 20% of the cases and submitted with an electromyogram (EMG) to the consulting neurologist for verification of diagnosis.
- Death and hospital discharge data will be evaluated to identify possible cases of ALS not reported to the surveillance project. When physicians can be identified, they will be contacted to determine why the person was not reported.
Future Analysis
The National ALS Registry uses a novel approach to collect information on PALS: existing data and self registration; therefore, it is important to evaluate the Registry’s completeness. Data from the state and metropolitan area-based surveillance projects will be compared with the data from the same areas collected in the National ALS Registry. ATSDR will use this data to determine if any geographic areas or subgroups are underrepresented in the National ALS Registry. If so, ATSDR will conduct outreach to underrepresented groups and try to identify other existing data that could be used by the National ALS Registry to identify PALS.
Links to participating sites:
Florida ALS Surveillance Project
New Jersey ALS Surveillance Project