i was wondering what the nih grant does?
It is a study of the Natural History of CAH, that is, CAH and its impact on the body and systems from birth to old age. It is 2 days of testing of every system, genetic testing, adrenal ultrasounds, other scans, extensive bloodwork. At the end, you get a complete report and opinion on your care.can people with cah and insurance go there for free do we still have to pay?
There are no costs to you and if under 25, travel costs within the US are covered.
is this for people without insurance and CAH?
It doesn't matter.
what does the national institute for health do for cah or other conditions?
NIH is the government's premier research facility. It is located in Bethesda, MD. There are numerous institutes but the CAH research takes place at the Institute of Child Health and Human Development. It performs intramural (at NIH) and funds extramural (outside NIH) research. It provides free care and conducts important research on many, many different diseases and disorders. CAH research is just one very small part of their research program.
is this medical care government funded?
Mostly. We have a unique arrangement with the NIH. We are paying the salary for the Nurse practitioner, Carol Van Ryzin, who does all of the recruitment and takes care of the CAH patients that come in. We are doing this because the NIH would not be able to run the program without our help due to budget cutbacks and hiring freezes.
how is the nih different from any other teaching and research facility?
First, its free, second, it is completely thorough (a 2-day work-up as opposed to the normal 15 minute office visit), third, it is the only facility running a CAH natural history. Forth, it does a lot of education and instruction, fifth, oh, yeah, did I say free and covers travel costs?
what actually do they study about cah?
Everything--genetics, modifier genes, related illnesses, basic science of the adrenals and enzymes involved, bones, hearts, ovaries, testes, blood sugar, growth, weight, you name it, they study it!
Any other questions? How about helping to support it? I'd hate to lose this important program!
Thanks!
Kelly
