Evaluating patient educational material

Evaluating patient educational material

 

Dr Andrew Dwyer is a leading KS clinical researcher based at CHUV, in Lausanne Switzerland. He is very interested in promoting the need for patients of KS / CHH to have access to more information on their condition. This can help patients have better discussions with their health care providers and take a more active role in managing the condition. 

A group of KS specialists across Europe, under the guidance of Dr Dwyer have produced a series of patient information sheets that give the basic information about Kallmann syndrome and CHH. Patient advocates were also involved in the design process to help ensure the information sheets provided the information that patients were likely to need.

They serve as a good introduction to the condition. 

Here is a link to a short patient survey which will help Dr Dwyer devise more web based on line support in the future. 

Evaluating patient educational material

Rare Connect Webinar 2. Consensus guidelines on treatment and diagnosis.

The paper discussed in this webinar can be found here: http://www.nature.com/nrendo/journal/v11/n9/full/nrendo.2015.112.html "A consensus paper representing the views and opinions of over 150 clinicians, clinical researchers and geneticists working across Europe. This paper represents the current best recommended practices for the treatment and diagnosis of KS / CHH patients.

Rare Connect Webinar 3. Patient information sheets.

Take the survey on the patient education materials: http://www.surveygizmo.com/s3/3042213/Patient-Survey Join the Kallmann syndrome community: https://www.rareconnect.org/en/community/kallmann-syndrome About the webinar: Andrew Dwyer is a leading PhD researcher and clinical specialist nurse working at CHUV, Switzerland and has published many papers on KS / CHH working with clinicians in Switzerland, USA and the UK.

UK Kallmann syndrome patient meeting

UK Patient meeting for KS / CHH

The meeting is to be held at the Royal Free Hospital in London on 6th August 2016.

It will be a chance for patients to meet and talk with medical experts on KS as well as an opportunity to meet and talk with fellow patients in a relaxed atmosphere.

Speakers will be Prof. Nelly Pitteloud and Dr Andrew Dwyer, who are internationally recognised clinical and research experts on KS, based at CHUV, Switzerland. 

Recent paper on reversal of Kallmann syndrome / CHH cases.

European Journal of Endocrinology paper on reversal cases of Kallmann syndrome / CHH.

 

This is a very interesting area of research I think.

There are basically two types of KS / CHH. One is where the GnRH releasing neurones have been blocked in their migration into the hypothalamus during early development, which normally results in KS cases as the olfactory nerves are blocked as well.

The other type is where the action of the hypothalamus is impaired. The GnRH neurones are in the right place but for some reason they do not fire in the correct manner to allow GnRH to be released correctly (called a pulse generator). This normally results in CHH where the olfactory nerves are unaffected and there is a normal sense of smell.

Whether you get a case of KS or CHH will depend on which gene or genes have been affected and where in the developmental process they have an effect.

An active area of research at the moment is looking in how the genes involved in the action of the hypothalamus operate and how they are influenced by external factors such as nutrition, stress, environment or even sexual activity. This is known as epigenetics, 

There are research groups looking to see if the reproductive cycle can be restored by switching on genes that are present but are not active by modifying external factors. It is certainly early days in terms of research but the more reversal cases they find the more chance they have of finding out crucial information which will increase the understanding of KS / CHH.

Reversal is less common in KS cases where there are less GnRH nerve cells inside the hypothalamus but reversal cases have be reported. There is a theory that GnRH neurones continue to grow / move throughout life and if the eventually reach the hypothalamus in sufficient numbers the reproductive cycle can start later in life. 

The reversal is always fragile and the hypogonadal state can return in some cases but it does provide a little bit of hope. 

It is good to know research is ongoing in this area.

BBC Radio interview on Kallmann syndrome.

On 23rd March 2016 I had a phone interview for a late night radio show on local BBC radio. They had heard the interview on BBC Radio 2 and wanted to talk to me about Kallmann syndrome. It was a recorded interview rather than live this time.

This is a link to the radio show. The interview starts at about 1 hour 26 mins into the programme.

Graham Torrington BBC radio show.

The link to the programme might not be active for very long. There is an audio clip of the interview on the top of this page. 

Interview about Kallmann syndrome on BBC Radio 2 Jeremy Vine show.

Recently I was on the Jeremy Vine show on BBC Radio 2 talking about Kallmann syndrome. It was only a brief interview but I tried to mention as many of the major points as I could. I was on the show as part of a segment on rare medical conditions with the show's resident doctor, Dr Sarah Jarvis.

This is the link to the show. The interview starts at about 1 hour 9 mins into the show.

Jeremy Vine BBC2 radio show. 21st March 2016.

This link on the BBC website might only be active for a short time. He is a link to just the interview part:

Kallmann syndrome interview

There was so much else I could have talked about and it was a shame it was such a brief interview. However I am very grateful for the opportunity to raise awareness of the condition and am quite keen to do more in the future if I can.