momtokendall
04-10-2011, 10:26 AM
Hello all-
I just wanted to let you know that the National Institutes of Health and Dr. Muenke have started a new study for people affected by Muenke Syndrome.
From the website:
What is this study about?
Cognitive function, development and the relationship between hearing loss and neurocognitive impairment in patients with Muenke syndrome is yet to be well defined. The ultimate goal of this study is to better define and characterize these through this study.
Additional goals include:
To characterize the cognitive and behavioral profile of individuals with Muenke syndrome.
To demonstrate the role of hearing testing in patients with Muenke syndrome and in those with unclassified coronal suture fusion (coronal synostoses).
To understand intellectual/functional outcomes in patients with Muenke syndrome who have different clinical presentations (ie. those with and without skull findings).
To understand the relationship between neuroimaging findings and neurocognitive function.
The study involves completing a survey either on the computer, or by phone or mail. You can find out more and sign up here: http://muenkesyndrome.nhgri.nih.gov/about.html
Kendall participated in the original study 5 years ago and we got to go the NIH and meet Dr. Muenke- it was very interesting... we are always looking for new ways to help develop a better understanding of MS- especially because when we found out about Kendall there was such limited info for us. Consider participating!
I just wanted to let you know that the National Institutes of Health and Dr. Muenke have started a new study for people affected by Muenke Syndrome.
From the website:
What is this study about?
Cognitive function, development and the relationship between hearing loss and neurocognitive impairment in patients with Muenke syndrome is yet to be well defined. The ultimate goal of this study is to better define and characterize these through this study.
Additional goals include:
To characterize the cognitive and behavioral profile of individuals with Muenke syndrome.
To demonstrate the role of hearing testing in patients with Muenke syndrome and in those with unclassified coronal suture fusion (coronal synostoses).
To understand intellectual/functional outcomes in patients with Muenke syndrome who have different clinical presentations (ie. those with and without skull findings).
To understand the relationship between neuroimaging findings and neurocognitive function.
The study involves completing a survey either on the computer, or by phone or mail. You can find out more and sign up here: http://muenkesyndrome.nhgri.nih.gov/about.html
Kendall participated in the original study 5 years ago and we got to go the NIH and meet Dr. Muenke- it was very interesting... we are always looking for new ways to help develop a better understanding of MS- especially because when we found out about Kendall there was such limited info for us. Consider participating!