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American research study

October 10, 2014

Information about an upcoming research study conducted by the NIH in America by Dr. Angela Delaney:

I am trying to get the word out about a research study we are conducting at
the National Institutes of Health (federally funded, not for profit), which
I think may be of interest to some of the patients and families in your
network. Please let me know if you can post this message somewhere, or if
there is any other assistance you may be willing to provide. Thank you
very much for your consideration. The message is below:

I am a pediatric endocrinologist and a researcher at the National
Institutes of Health (NIH). We are conducting several related studies on
disorders of puberty and reproduction. Our goal is to learn more about what
regulates pubertal development and reproduction by studying people who have
an abnormality of certain hormone levels, resulting in abnormal puberty or
Anyone diagnosed with Kallmann syndrome (KS) or idiopathic hypogonadotropic
hypogonadism IHH (also known as congenital, or isolated, GnRH deficiency)
is eligible. Patients who may meet these criteria and have a family history
of any related issues are especially encouraged to participate.
We are currently in search of female patients who also have abnormal
development of the uterus, including a uterine septum, uterine agenesis
(including, but not limited to Meyer-Rokitansky-Kuster-Hauser syndrome),
bicornuate, didelphys, or similar anomaly AND a history of delayed pubertal
development, KS or IHH.

Participation may include a full clinical evaluation, in addition to
genetic testing, all at no cost to you. Travel and accommodations may be
provided within the US, or if you can’t or don’t wish to travel to the
Washington, DC area, you can participate from a distance. Additional
information can be found on our website:
The studies are conducted by the Unit on Genetics of Puberty and
Reproduction at the Eunice Kennedy Shriver National Institute of Child
Health and Human Development, in collaboration with the Reproductive
Endocrine Unit at the Massachusetts General Hospital.
Please feel free to forward this information to any families or individuals who may be interested and willing to participate in our studies. Interested individuals and families may contact the research team at, or 301-827-4221 to determine eligibility or receive more information. Please feel free to contact us with any questions.

  1. Edward D Peterson permalink

    I was born 7/9/1945 in Marquette MI.
    Finally diagnosed at age 20 just before I graduated from MSU.
    I tried to do a dissertation when I was a grad student at UM in Ann Arbor.
    I was not able to find any subjects willing to help with research data.
    I wanted to look at the effects of delayed adolescence on self esteem.
    I would be very interested in assisting with your study in any way. At long last!
    How exciting!

  2. I did the research & Dr. Angela Delaney is the top doctor for research on Kallmann’s syndrome

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