Welcome To Kaitlynn's Place

Kaitlynn was born September 29th, 2004. We have seen neurology specialists from St. Louis to New Orleans since she was born. Unfortunately, we still do not have a definitive diagnosis for Kaitlynn. The best guess her doctors have to offer is mitochondrial disease.

How To Find Clinical Trials

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Clinical trials are essentially human biomedical or health-related research studies that follow a pre-defined protocol. These trials can be interventional (addresses whether experimental treatments or new ways of using known therapies are safe and effective under controlled environment) and observational studies (address health issues in large groups of people or populations in natural settings.)

By becoming part of a clinical trial, you not only proactively participate in your own health care and gain early access to cutting edge treatment, you also contribute to the treatment and research of the disease you are afflicted with.

I get questions all the time about clinical trials. Many parents of special needs children are overwhelmed when it comes to finding a clinical trial that is disease, age, and location appropriate. I watch the clinical trial scene religiously for an idiopathic/mitochondrial disease clinical trial that fits my daughter. The two websites that I find easiest to use, reliable, and always current are:

CenterWatch


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This site has a little of everything. It is an excellent source to find news, directories, analysis, and listings of clinical research. If you are unfamiliar with clinical trials, the site breaks down the process in an easy to understand manner. You can search clinical trials and find out the who, what, when, where, and how of each trial; search for drug information; review already completed trials; and sign up for e-mail alerts about specific clinical trials. Start your search at CenterWatch.

ClinicalTrials.gov 

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This site includes current information on federally and privately supported clinical trials for a wide range of diseases and conditions. Search by topic, keyword, disease, location, etc.. Studies are updated daily. At the moment, there are 91,384 trials listed on the site. ClinicalTrials.gov was developed by The National Institutes of Health (NIH) and The Food and Drug Administration (FDA…so users can rest assured that the listings are all legit. Start your search at ClinicalTrials.gov. 



If you have any questions, feel free to leave them in the comment section:)