Undiagnosed Conditions & Kids

[Guest guest]

I wanted to relay something I recently heard about to those parents who are

frustrated about undiagnosed conditions. I learned of a clinical trial to try

to understand the experiences of those parents. Here is a link to the study

information:

http://clinicaltrials.gov/ct2/show/NCT00955370

I know this doesn't provide answers on any conditions. But it is the NIH trying

to understand families' experiences. If you are in this situation, or know

someone who is--or you are on a parenting board that discusses stuff like

this--please pass this along.

I examined the study, and it appears to be well designed and appropriate.

Clicking the SurveyMonkey link below provides more answers to questions you may

have, and provides the contact information at the NIH if you have questions.

You can bail out at any time.

Overview:

The National Human Genome Research Institute at the National Institutes of

Health (NIH) is sponsoring a study that seeks to learn more about how parents of

children with an undiagnosed medical condition think and feel about their

child's condition. We hope that this knowledge will improve the health care and

counseling for these parents. Men and women who are 18 years or older and have

at least one child with a medical condition that has remained undiagnosed for

more than 2 years are needed to take part in this study. Participation involves

one survey that takes about 45 minutes to finish. The survey can be taken

online or a paper copy can be mailed to you. For additional information about

this study, you may review the Notice to Participants

\http://www.surveymonkey.com/StudyNoticeUncertainty disclosure

Hope this benefits.

Kris