TABLE 2—

How Environmental Health Registry Criteria Have Been Applied in Actual Situations

Criteria	World Trade Center Health Registry	National Amyotrophic Lateral Sclerosis (ALS) Registry	Chlorine Release at a Poultry Processing Plant in Arkansas (600 workers exposed, 170 hospitalized)
Is a registry warranted?	Yes	Yes	No
Public health significance	Unprecedented terrorist mass casualty event with uncertain public health impact	Progressive and fatal neuromuscular disease No cure has been identified No national estimates on incidence or prevalence	Single plant exposure, no fatalities
Scientific significance	Exposure to a mixture of many noxious substances and horrific events	Information on risk factors may provide clues to etiology	Health effects of chlorine exposure are well known
Well-defined purpose	Follow health outcomes of exposed population	Collect demographics and risk factor information	Uncertain; potential to analyze risk factors for prolonged health effects
Clear outcomes	Generate data for research	Generating data for research Improve the delivery of health services	No particular reason to follow workers over time
Well-justified scope	Exposed population restricted to lower Manhattan	National scope	No registry warranted
No alternative data sources	Alternative data sources were restricted to specific groups, such as firefighters.	Not a reportable disease Medical records are difficult to obtain on a national basis	Personnel and medical records readily available
Is a registry feasible?	Yes	Yes	No
Ability to address concerns	Sufficient sample size and well-defined exposure	Administrative databases provide more than 80% of cases Close relationship with patient support organizations and scientific community	Potentially could help reassure workers about long-term health effects
Reasonable timeliness	Registry effort started in July 2002, 10 mo after event; data collection began in September 2003	Launched 1 y after congressional mandate	Uncertain how long would it take to establish a registry If plant was supportive, could be done quickly
Sufficient funding	$23.5 million of initial funding	$12 million of initial funding	No funding for a registry
Appropriate staffing	Collaborative effort between ATSDR and the New York City Department of Health and Mental Hygiene, which has staff dedicated exclusively to the registry	Medical epidemiologists, statisticians, and IT contractors dedicated to registry maintenance	No additional staff available
Communication capabilities	A contractor was charged with promoting registry and conducting outreach	Partnership with patient support organizations and medical societies Extensive social media outreach	Language barriers (most workers were Spanish- or Marshallese-speaking)
Ability to collect information	Telephone, in-person, and Web-based interviews	Use of administrative databases and self-registration web portal	Would require translation of questionnaires into Spanish and Marshallese and interview staff fluent in these languages

Note. ATSDR = Agency for Toxic Substances and Disease Registry.