Re: Re: Re: Newborn Screening Survey - Thesis Project
11/8/00 2:09 PM
Anyone is welcome to do anything they would like with these results. However, keep in mind that it was a very small sample and it was not random, so the results many not be generalizable. I do have references for some much larger studies that have been conducted with similar results. These might be more useful than my numbers. Let me know if you would like them. I also want to say how much I agree with Louise. Researchers are not very good about making sure participants in their research know what the results are. I think they assume that the participants don't really care or understand which couldn't be further from the truth in most cases. For example, a few days after being discharged from the hospital for CAH treatment, my 3 week old son was hospitalized again with an unexplained fever. I agreed to enroll him in a study where they tested his blood and csf for viruses. I only agreed to do it if they would tell me the results. Of course they never did. I finally called the researcher to find out that his tests were negative. I'm sure I'll never know the outcome of the study. Anyway, thanks for all your responses!
Cindy
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