From 11-14 May 2024, we presented virtually at the European Society of Endocrinology Conference, ECE 2024, the largest endocrine event in Europe which this year took part in Stockholm, Sweden, and online for healthcare professionals.

This is our fourth year presenting at the conference, where we have the opportunity to reach 4,000 endocrinologists from more than 100 countries. As well as attending our Patient's Voice session, delegates could view the ADSHG interactive poster in the Patient Experience Zone. Read on to learn more and also hear about Professor Stafford Lightman's plenary lecture: “The clinical importance of high resolution, automated, ambulatory measurement of tissue steroids.” 

The Patient’s Voice – Where Patient Experience meets Clinical Science

The Patient’s Voice session is described as when the Patient Experience meets Clinical Science. Once again we joined forces with Alex TLC, the Leukodystrophy charity. It is important to us to work with Alex TLC as around 70% of males with Adrenoleukodystrophy (ALD) also have Addison’s disease.

This year our topic is: ”The Clinical Importance of the Prepared Patient & Healthcare Professional” building on the new Consultation Reference Guide, developed with the Society for Endocrinology, for endocrinologists and endocrine nurses. We were delighted to be joined by Professor John Wass as our medical speaker. Delegates could hear how we work to improve education and awareness of Addison’s disease, adrenal insufficiency and leukodystrophy, accessing educational content that connects the patients’ needs and views with the scientific and clinical view of an expert. This was also recorded allowing the international audience to watch back on demand!

We shared examples of how our two patient advocacy groups can provide resources, support and research grants to provide extra support. This is a great opportunity for us to actively engage with the endocrinology medical community, to raise awareness and develop our shared understanding of rare diseases.

If you're a healthcare professional and would like to know more about our resources, visit our Endocrinology Hub. 

Plenary Lecture by Professor Stafford Lightman

Our Addison’s Roadshow Cardiff medical speaker Professor Stafford Lightman presented his plenary lecture at ECE 2024 event titled: “The clinical importance of high resolution, automated, ambulatory measurement of tissue steroids.” This fantastic talk further raised the profile of the U-RHYTHM research to the international community. Stafford colleagues Thomas Upton and Ileana Botusan also presented at the event.

Through his research, Stafford highlighted that one pattern of replacement steroid therapy does not suit all, therapy needs to be personalised. To ensure the proper pattern of cortisol replacement is given, sample cortisol levels can be taken as people go about their normal lives through the novel U-RHYTHM sampling system. 

Stafford shared with us a summary of his fantastic lecture: “The clinical importance of high resolution, automated, ambulatory measurement of tissue steroids.”

"In people with normal functioning adrenal glands the levels of cortisol in the blood are very dynamic, not only changing over the 24 hours with low levels at night and highest levels in the morning, but also varying on an hourly basis.

In order to assess the importance of these rhythms of cortisol we first looked to see their relevance in rodents. In our first studies we looked at the importance of normal rhythms for memory. We used a measure called ‘Long Term Potentialion’  which assesses how well the hippocampus (a main centre for memory function) works. We found that Long Term Potentiation was much better in the active phase of the animal (equivalent to our morning) than it is in their sleeping time. We then averaged out their steroid replacement across the day so they had no daily rhythm and we found that memory was impaired over the whole day. Clearly receiving the right pattern of steroid was important for their memory.

In our second series of studies we looked at how the rhythm of steroid replacement affected appetite. The animals remained in their normal light:dark cycle and we simply reversed their steroid pattern so they got maximal pulsatile levels of steroid during their sleeping time and minimum levels when they were awake. What we found was that instead of eating only during their active phase, they ate throughout the whole 24 hours. We then looked at the genes that controlled their appetite and found that these had also been reversed - showing how the rhythm of steroid treatment controls the generation of appetite.

These and other studies were the background to why we felt it was so important to ensure the proper pattern of cortisol replacement in patients with adrenal insufficiency. Since it would never be practical to take multiple blood samples from people in their own homes, we needed to find an alternative. We therefore developed the novel U-Rhythm sampling system which can be worn at home or at work and can thus sample cortisol levels in people going about their normal lives. This has now been used in over 700 people including a formal study in 214 normal subjects which was recently published in Science Translational Medicine (2023 Jun 21;15(701). This showed both the circadian and more rapid ultradian rhythms in our subjects as well as considerable differences in patterns between different individuals. Interestingly we also found in our patient groups, which have not yet been published, considerable differences in the way different people responded to different steroid medications.

The bottom line of these studies is that to treat an individual with adrenal insufficiency we cannot give a one pattern of replacement to suit all. Therapy needs to be personalised. We need to assess individually how a patient responds to any specific medication, whether it is 3 times a day hydrocortisone or one of the slow-release compounds that are available. Different people will need different patterns of medication - and one of the most important factors will be to ensure they have a pattern that follows the normal circadian rhythm increasing from about 03.00 to about 08.00 hrs each day. To date, only pump replacement therapy can reliably do this and we need to check on an individual basis whether any of the new formulations actually achieve this on an individual patient basis. Only when we can actually check whether we have actually achieved a good rhythm of replacement should we be satisfied that we have provided optimal treatment to patients."

Thank you to Professor Stafford Lightman and the U-RHYTHM team for your continued work on this important research for those of us living with steroid dependency. 

Learn more about U-RHYTHM

If you're a healthcare professional and would like to know more about our resources, visit our Endocrinology Hub.