Studies at NIH

A clinical research study is a study in which patients receive treatment in a clinic or other medical facility. The study may test new methods of screening, prevention, diagnosis, or treatment of a disease or syndrome. The National Institute of Health has many studies going on. They are located in Bethesda, Maryland. The NIH also offers you up to date information on diseases, syndromes, and different conditions. The information is collected from 50 states and 156 countries.
Can you believe that the clinical trails.gov receives over 40 million page views per month? Well they do. Chloe had the chance to go to the NIH to participate in a study back in January 2008 for Primary Ciliary Dyskinesia.
Primary Ciliary Dyskinesia (PCD) is also known as Immotile Cilia Syndrome. Kartagener’s Syndrome (KS) is a subset of PCD characterized by situs inversus. KS maybe a combination of chronic sinusitis, ear infections, respiratory infections, and situs inversus (organs are reversed). People with PCD or KS have abnormal or absent ciliary motion. Cilia are tiny hair-like structures that move mucus out of one’s respiratory passages. (Think of Cilia as a broom and it sweeps all the dust away from the floor. If the broom isn’t working right then dirt just builds up.) If one’s Cilia aren’t working right then the mucus becomes stuck and blocks the respiratory tract. This may lead to pneumonia and other various types of respiratory infections.
I was told by a doctor that the nodal cilia of embryo are responsible for controlling the normal position of the heart & visceral organs. However, if the nodal cilia aren’t working right then there is an equal chance of situs inverse and situs solitus. The NIH along with Children’s National Medical Center has a study going on called Dyskinesia, Heterotaxy, and Congenital Heart Disease. They think that PCD and Heterotaxy and Congenital Heart Disease may have the same genetic origin as PCD.
Chloe is still involved in the study and our genetic doctor at Children’s Hospital in Boston is now working with the NIH. My family and I are very grateful to the NIH for all their help. Chloe was very lucky to have been picked to participate in the study. It is my belief because of the researching going on at the NIH we were able to figure out what was going on with our precious daughter. Most of all, Chloe’s doctors at Children’s Hospital in Boston were able to diagnose Chloe with Heterotaxy Polysplenia with Functional Asplenia.
To find out more about this study visit the following web link noted below:

http://clinicaltrials.gov/ct2/show/NCT00608556