KS Patient Meeting. Sat 17th August 2019. Royal Free Hospital, London.

Kallmann Syndrome / Hypogonadotropic Hypogonadism Patient Meeting.

 

Sat 17thAugust 2019. 11am – 4:30pm.

 

Medical School Library, Ground Floor.

Royal Free Hospital, Pond Street, Hampstead, London. NW3 2QG.

Speakers:

Prof. Nelly Pitteloud. CHUV, Lausanne, Switzerland

Prof. Pierre Bouloux, Royal Free Hospital, London.

 

For more information contact:

kallmannsyndrome@gmail.com

 

Chance to hear from experienced medical experts and to ask questions about diagnosis and treatment options and a good opportunity to meet and talk to fellow patients in a relaxed and friendly environment. 

 

Patients, parents and family members all welcome.

Nearest tube: Belsize Park (Northern Line) or Hampstead Heath Station (Overground).

Directions to the hospital

The Medical School Library is on the ground floor of the hospital, which is the floor you enter the hospital using either the Pond Street or Rowland Hill entrances. 

 

There is M&S coffee shop and WH Smith shop located very near the library with an additional coffee shop outside the Pond Street entrance. There is a larger M&S food shop and other shops on Pond Street, down the steps from the hospital’s main entrance. 

Hospital RF.jpg

Patient Meetings.

There are patient meetings planned for later in 2019.

17th August 2019. Royal Free Hospital, London UK. With Prof. Pierre Bouloux and Prof. Nelly Pitteloud.

12th October 2019. Boston College, Boston USA. With Dr Andrew Dwyer and specialists from Massachusetts General Hospital, Boston.

Rare Disease UK. Patient story.

One of younger KS patients from the UK has had his Kallmann syndrome story published on the Rare Disease Website:

Me:Just not quite yet

I think it is useful when patients are able to talk about their rare condition to help raise awareness to help other patients get a diagnosis. By its very nature, Kallmann syndrome can be a difficult condition to talk about openly.

I have always enjoyed the chance to talk about my condition to others and I think it helps me in my own life.



Clinical trial for Kallmann syndrome / CHH patients in UK.

A clinical trial in London for Kisspeptin test.

Kallman’s syndrome / Congenital Hypogonadotropic Hypogonadism (CHH) is a condition that is frequently due to a problem with the function of an important part of the brain called the ‘hypothalamus'.

Kisspeptin is a naturally occurring hormone (already present in the body) that was discovered in 2003 and is known to be able to be able to safely stimulate the hypothalamus.

Kisspeptin has been given at our centre in Imperial College London to several hundred men and women and has not been associated with any side effects to date.

We are looking to better understand how useful a 'kisspeptin test’ could be to identify patients with CHH and whether their ability to respond to kisspeptin could provide useful information about the current function of their hypothalamus (for example, patients with CHH can sometimes spontaneously normalise their hypothalamic function, which could be identified through a kisspeptin test).

The current research study would involve 2 visits (each lasting up to 7hrs in total starting in the morning) occurring at least one week apart at Charing Cross Hospital in Hammersmith, London.

Following an explanation of the study and a review of clinical details and examination, potential participants can indicate their willingness to take part in the research by signing a research consent form.

All research ethical practice such as confidentiality will be respected throughout.

One visit will be to have a 'kisspeptin test’ and the other will be to have the currently used test called a ‘GnRH test’.

At each visit, a cannula (plastic tube) would be placed in a vein in the arm to allow us to give the GnRH or kisspeptin hormones and then to take blood without requiring any further needles.

We would not expect participants to encounter any adverse effects during or after either visit in either the short or long term.

A blood sample will also be taken to screen for genes involved in the function of the hypothalamus.

A formal smelling test will be performed to record whether the sense of smell is intact.

Participants can eat and drink as usual and are encouraged to bring food/entertainment (wifi will be made available).

Participants will be reimbursed £100 for each visit for their time in addition to travel expenses.

If travelling from outside of London, we will also arrange accommodation if needed.

If you would like to learn more about this research, you can email us at

kisspeptin@imperial.ac.uk 

and leave your contact number and we will be pleased to get in touch with more information.