Ongoing clinical trial for fertility treatments for women with KS / CHH in the US. Volunteers required.

Ferring Pharmaceuticals is currently recruiting for a Phase III investigational drug study for women with Primary amenorrhea with hypogonadotropic hypogonadism (Hypo Hypo) who are looking to get pregnant. 

The study might be a good fit for you if you meet the following criteria:

•             You are a woman 18-40 years old

•             You have a clinical history or were recently diagnosed with primary amenorrhea with   hypogonadotropic hypogonadism

•             You have the desire to become pregnant

If you decide to take part in the research study, you would:

•             Read and acknowledge a consent form

•             Have tests and procedures performed and answer screening questions to determine eligibility to participate

•             Take study drug as directed by your study doctor

•             Complete a patient diary as instructed by your study doctor

•             Have tests and procedures performed during the study and at study close-out

Women who take part in this survey will receive pre-determined compensation for cost of time and travel to and from the appointment, parking and other transportation costs for all visits except for the screening visit.  Also, if patients do not ovulate during the study, they will be offered one cycle of gonadotropin medications (Menopur®, Bravelle® and/or Novarel®) at no cost. No study-related follow-up will be provided. The patients will be responsible for any obstetrical/follow-up care.

If you are interested in learning more about the study and to see if you qualify as a candidate, please go to the following website to find a clinical research site close to you.  

www.dspstudyinfo.com 

https://clinicaltrials.gov/ct2/show/NCT01976728?term=hypogonadotropic+hypogonadism&rank=4

Research study in America.

Dr. Angela Delaney sent a message using the contact form at
http://kallmanns.org/contact.

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
fertility. 

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: http://ird.nichd.nih.gov.  
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 UGPR@mail.nih.gov, or 301-827-4221 to determine eligibility or receive more information. Please feel free to contact us with any questions.

KS online study

I am forwarding a e-mail from a research team based at Pennsylvania State University in the USA. They are working with the KS team at Boston with a survey of KS / CHH patients. They hope to see if there are any common factors patients with KS / CHH experience with their diagnosis and treatment.

The survey is open to everybody, even families of patients with KS / CHH. This hopefully will build on and complement the survey done last year.

The questionnaire is totally anonymous and will take about 45 mins to complete on line. It is a very personal and intense set of questions. There is also a series of visual and audio questions. I think it is a  well designed survey. While some of the questions are deeply personal they cover a lot of topics that come up in discussions I have with fellow patients.

If you wish to participate or wish to know more information you can e-mail Lauramarie on the e-mail address below.

======================================================

We are currently seeking research participants who have been diagnosed with idiopathic hypogonadotropic hypogonadism (IHH), including Kallmann Syndrome (KS), for an online study regarding hormone replacement therapy and psychological well-being.

To participate, you must be 18 to 65 years old. Although you may wish to participate out of a desire to promote this research, you will also be compensated for your participation (about 45 minutes online) with $25.

We would also like relatives of IHH participants (siblings or first cousins) to participate in the study. If you have IHH (including KS) and have a relative who might also be interested in participating, please pass this information on to them.

You may still participate even if you do not have a relative who is willing to participate in this study.

For more information about participating in this study, or to sign up, please contact Lauramarie at lep161@psu.edu

If you have any general questions about this project or our overall research goals, please contact Dr. David Puts at dap27@psu.edu or visitwww.putslab.psu.edu/research.html.

Identifying the unmet health needs of patients with congenital hypogonadotropic hypogonadism using a web-based needs assessment: implications for online interventions and peer-to-peer support.

http://www.ojrd.com/content/9/1/83

http://www.ncbi.nlm.nih.gov/pubmed/24915927

This paper was written by Andrew Dwyer of CHUV in Switzerland. Through an on line survey and three patient meetings he interviewed a number of Kallmann and CHH patients to gauge their feelings and attitudes about their diagnosis and treatment.

One clear idea from the paper is that since KS / CHH is such a rare condition there is an onus on the patient to take a lead in finding out information for themselves as they can often be treated by health professionals who themselves have not come across a patient with KS / CHH before. Internet sources and patient groups can play a big part in this.

Having KS / CHH can be a very isolating condition, especially if not diagnosed, so being able to connect to and communicate with fellow patients can be very helpful to some patients. A lot of patients will not feel the need to actively partake in groups but are happy enough just to know that there are other patients out there that they could talk to if they wanted.

Some patients might only need the support of groups at specific times such as getting the original diagnosis, starting relationships or trying to achieve fertility.

It is clear that some patients with KS / CHH are content with their diagnosis and are happy just to get on with their lives. However it is important to identify the patients that might need extra help and ensure that they have access both to patient support groups and expert medical opinion if they need it.

Rare Connect Kallmann Syndrome Community.

https://www.rareconnect.org/en/community/kallmann-syndrome

Rare Connect is a joint venture by EURODIS (European organisation that runs support groups and communities for rare disorders) and NORD (USA based National Organisation for Rare Disorders).  

Rare Connect provides a framework for patient support groups for rare condition to publish information on the internet and help patients connect and communicate with each other.

There is a community group for Kallmann syndrome.

They also allow groups to have on line web seminars via video link so patients can talk to other patients and medical experts in real time. It is a form of on line video conferencing. Once the group has been established and has enough members it is hoped we can organise one for Kallmann syndrome.

There are patients meetings occasionally but having video conferencing will allow patients who can not attend these meetings to talk to other patients and medical experts on Kallmann syndrome and CHH.

We already have groups on Facebook and Yahoo but this is a network totally separate from any social network groups and allows fellow patients to communicate in privacy.

FDA approve use of long acting testosterone injection - Aveed (Nebido).

http://online.wsj.com/article/PR-CO-20140306-906700.html


Nebido is a long-lasting testosterone injection that can be effective in the restoration of testosterone levels in patients with Kallmann syndrome and congenital hypogonadotropic hypogonadism.

The testosterone undecanoate injection is given as a deep muscular depot injection. After the initial two injections between 4 and 6 weeks apart as a loading dose injections are subsequently given every 10 to 12 weeks depend on the response.

Nebido has been in use in most parts of the world for a number of years (Reandron in Aus & NZ).
After being refused a licence in the past the FDA has now approved its use under the trade name of Aveed.

This injection gives patients another alternative to their testosterone delivery and the longer period between injections might be more convenient for some patients.

UK Patient meetings 2014.

There are patient meetings planned for January 2014.

18th Jan. Royal Victoria Infirmary, Newcastle-upon-Tyne.

25th Jan. Royal Free Hospital, London.


The meetings will be a combination of a chance to ask KS experts questions and the chance to meet and talk to fellow patients.

Further details to follow or e-mail neilsmith38@hotmail.com for more information.