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Friday, March 21, 2014

Seeking Information On Prevalence Of Diseases Locally

diseaseclusterresearch@gmail.com

6 comments :

Anonymous said...

I hope people come forward from the Austin area . There have been so many cases of MS , cancer , birth , defects , ect. that i lost count just thinking about it. A study is definitely needed.

Anonymous said...

My Nero Dr. has thought the very same thing about the clusters of people with MS in our area. It is very odd.

Anonymous said...

If this is simply doing 'research' why all the implied secrecy? No name other than 'concerned community member' and a very general email and no disclosure of what 'organization' this 'data' will be shared with. To some people something about this may not really sound ethical. There may be the possibility of more responses if people knew what they were responding to. Just sayin.

Disease Cluster Research said...

As the researcher, if you wanted to know what group I am sending the data to then just ask. It is the national disease clusters alliance and the national institute of health. Also, I only asked for statistical data, what ethics would this be violating? The manner in which I am conducting the research certainly falls under the parameters of ethical research methods. You are not forced to give information, it is completely voluntary. By asking for limited information I am trying to be sensitive to the fact that some people may not be comfortable with sharing detailed information. As to my reasons for remaining anonymous...I think that you can understand that living in a small community with a listed phone number provides anyone with access to my address as well. I wanted to avoid getting phone calls with information and/or opinions about the study I'm conducting. Having a chronic/rare illness myself, I hope that many people will respond and help add volume to the research, but at the end of the day, I will send whatever information people have chosen to share with me. Hopefully this will be enough to get some attention and help answer the question of why so many of us in this area are getting sick.

Anonymous said...

I have always thought that someone needs to do a study on the cluster of diseases in our area. I have a question though. If we report someone and they report themselves would the data be skewed? I know several people but I don't know their middle initials.

Disease Cluster Research said...

So far, I haven't had any repeats. This is why I also request gender in the data set. I won't send that information, but it will help to make sure there won't be duplicates information. Also, I have the information in an excel spreadsheet and set it up to notify me of any duplicates.