There are many websites and papers that cite this website due to the extensive amounts of data that are collected from this site. The website provides a lot of information and data based off health afflictions as a result of 9/11. Since this registry is the largest of its kind, data from it is pulled for numerous studies on 9/11 and its health effects.
Researchers use this system extensively in order to find correlations between 9/11 and different repercussions as well as to collect and gather data about those who were exposed during 9/11. A unique aspect of this registry is that it contains more participants than any other registry of its kind, making it a great tool for researchers. The public also utilizes this information to study their own forms of various research as well as to gain knowledge on possible afflictions related to the event. The registry also follows up with participants with interviews and matches with other health registries. The website also offers resources to researchers to learn more about the research at hand and where to find other published reports about 9/11.
This health registry relies heavily on collaborations and other organizations. There is actually an entire section of the website dedicated to listing all the organizations that collaborate and work together in order to provide this information for the registry. The registry is a collaborative effort between the US Department of Health and Human Services and NYC.
There are 3 advisory groups that work with WTC health Registry, they are the Community Advisory Board, the Labor Advisory Board and the Scientific Advisory Board. The following organizations are also listed as organizations that this registry depends on for research, number and data:
Government
Scientific
This registry allows for the tracking of the health effects of the 9/11 disaster. It is open to the public, where they can see the most common disorders and afflictions that those effected by 9/11 are dealing with today. The public can access this website and read up on the rates of lung infection, heart disease, PTSD, alcohol use, as well as the effect it has had on adolescent health. This registry was not only set up for the public use though, it is also used and produced by researchers. The researchers track the longterm health effects 9/11 has had on those exposed. The data also provides experts and researchers with the means to draw conclusions and analyses. Learning about the long term effects of 9/11 will raise awareness as well as allow for the understanding of how disasters of this caliber can effect those around it, in both long term and short term ways.
This site runs like any run of the mill website. If there are any issues or questions about the website there is contact information provided to seek assistance with the site or ask questions regarding the information.
By phone: 866-692-9827
By email: wtchr@health.nyc.gov
By fax: 347-396-2893
By mail: WTC Health Registry
New York City Department of Health and Mental Hygiene
42-09 28th Street, CN 6W
Queens, NY 11101-4132
I would say that a situation where this site would be difficult to work with would be in an urgent, or time sensitive situation. Let's say during a situation where quick medical care is needed, this site would be difficult to work with and not a good source of information during that time. Yet in most situations and settings this would prove to be a good source of data.
The data is mainly visualized in report form. There is also a section of the site where data and statistics that have been confirmed are written out separated by disease/disorder type. So in the "what we know" tab PTSD, depression, tobacco use, asthma, lung function, respiratory issues, heart disease and adolescent health are separated into different sections with confirmed disease rates, correlations and numbers listed beneath each section. The same group that runs this registry in terms of research, called the 'WTC Medical Working Group' also provides links to other current studies on the matter, some of which they have partaken in.
This website itself doesn't translate the data into information. Researchers collect the data, run analyses and tests, and then post them on the site for the public as well as other researchers. The website doesn't translate or post any data, registry staff does. Participants also do not enter the information into the website. Any information participants need to update or provide must be given directly to the registry staff.
As mentioned, this site offers data on long term health afflictions of those exposed to 9/11. Yet the site also offers information about the participants in the registry. How they were selected, how many people are entered in the registry and where their exact locations were during the attacks. On top of providing data on the participants, the site also offers information on funding, as well as access to annual reports addressing the health impacts of 9/11. The site also gives access to those that the registry works with and collaborates with. The history behind the registry and the attacks are also provided. Sources for all data and a full bibliography is also available along with information about legal aspects of the health and compensation act, enrollee's confidentiality and thousands of other resources.
Participants complete a 30 minute in person or telephone interview. They offer information about their mental health and physical health (the questions they are asked can be found here: http://www1.nyc.gov/assets/911health/downloads/pdf/wtc/wtc-questionnair….) Information is also gathered about where they were during the attacks, as well as their level of exposure to rubble and smoke etc. After this initial interview, there are waves 2-4 of interviews. These consisted of follow up questions as well as more in depth questions about hospitalization, health conditions, and symptoms.