HRA Pharma Rare Diseases Sponsored Symposium from ECE 2019

The HRA Pharma Rare Diseases-sponsored symposium at the European Congress of Endocrinology, ‘The Cushing’s Collaborative: Can cross-discipline partnerships improve outcomes?’, took place on Sunday 19 May and attracted an audience of more than 180 attendees from more than 40 countries, mainly from across Europe, but also from Australia, Hong Kong, India, the Ivory Coast, New Zealand, the Caribbean, Syria, Tunisia and Uzbekistan. Attendees were able to explore the importance of multidisciplinary team collaboration to optimise outcomes for patients with Cushing’s syndrome.

The interactive symposium was chaired by Professor Antoine Tabarin (France) and Dr Elena Valassi (Spain), who opened the session with a short patient testimonial. The Chairs built further on this real-life experience, outlining some of the current challenges and unmet needs in Cushing’s syndrome, based on a survey answered by 164 patients, setting the scene for the focus of the symposium on the management of various aspects of the disease, including bone health, thrombosis and neurocognitive functioning.

Can we build a strong foundation to maintain bone health?

The importance of bone and muscle health in patients with Cushing’s syndrome was discussed by Professor Iacopo Chiodini, who highlighted the increased prevalence of fracture and muscle weakness in subclinical hypercortisolism and persistence following cure of patients with Cushing’s disease. Interestingly, he highlighted the fact that osteoporotic fractures associated with Cushing’s syndrome may occur despite normal bone mineral density. Professor Chiodini went on to discuss strategies to preserve bone and muscle health, by the use of anabolic therapy prior to or after surgery, on a case by case basis.

Learn more about managing fracture risk and bone health in the comorbidities section here.

Is there a clear path to progress in thrombosis risk reduction?

Dr Richard Feelders re-inforced the multi-system morbidity associated with Cushing’s syndrome in the session that followed, discussing the ‘Cushing coagulation paradox’.
The hypercoagulable state can also persist following surgical or medical cure, highlighting the need for postoperative thromboprophylaxis, although a tailored approach to specific patient needs was recommended.

Should neurocognitive functioning be front-of-mind in management strategies?

Dr Cornelie D. Andela went on to discuss whether neurocognitive functioning should be front-of-mind in management strategies. She discussed the multifactorial nature of persistent psychological and cognitive morbidity in patients with long-term remission of Cushing’s syndrome, which is caused by underlying biological mechanisms. Healthcare professionals need to be aware of persisting morbidities following treatment cure. In addition, healthcare interventions that can be included in management strategies to improve overall quality of life for patients with Cushing’s syndrome were discussed.

Understand more about the need for disease management here.

Creating collaborations: How can we achieve better outcomes?

A lively question and answer session ensued involving the whole panel.

Stratify patients at risk of thrombosis

The discussions included the usefulness to stratify patients at risk of developing thrombosis based on coagulation parameters, as not all patients are at risk. Thromboprophylaxis in active Cushing’s syndrome and in the postoperative phase should be given, with a tailor-made approach considering additional venous thromboembolism risk factors (age, obesity, mobility, etc.) and risk of bleeding. Postoperatively, extended thromboprophylaxis should be considered for at least 4 weeks. There is a need for an international, multicentre, prospective study to inform on the choice, intensity and duration of thromboprophylaxis.

Curing hypercortisolism will allow bone recovery

In patients with apparent bone disease, following cure of hypercortisolism, it was recommended to assess the overall risk of fracture, e.g. familial factors, previous fractures, etc., when deciding if the patient should be treated. The preference would be to allow bones to heal naturally as cure of hypercortisolism would allow recovery. In high-risk patients, an anabolic bone-active drug is preferred, along with at least 1.5 mg of calcium per day and vitamin D supplementation. Limited glucocorticoid steroid use was recommended. Tailored physical therapy was recommended for muscle weakness once the patient has recovered from surgery, including resistance and weight training.

Disease-specific tools should be used to help identify psychological and cognitive morbidity

The difficulty relating to structural brain changes to psychopathology was also discussed and was considered to be relative to the power of the tools available. Magnetic resonance imaging studies can show correlations in a small group of patience.

Pharmacological treatment for cognitive changes is not recommended to be the primary treatment, and when required, following self-help programmes and psychiatric support, pharmacological treatment should be used in conjunction with physiological therapies such as cognitive behavioural therapy (CBT). Physicians have limited time with patients and the use of tools such as SF-36, along with a disease-specific questionnaire, can help support physicians to assess the presence of psychological problems and decide is separate discussions need to be implemented. 

Click here for more information on patient treatment

The important role of nurses in the management of Cushing’s syndrome was also discussed. Phycologists work closely with endocrine nurses, which is valuable as they handle more practical aspects of managing Cushing’s syndrome, have the time to support patients and are well placed to identify psychological and social problems.

Guidelines and an algorithm for the treatment of Cushing’s disease can be found here.

If you would like to watch the webcast from the meeting please go to

Speaker biographies


  • Antoine Tabarin

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  • Elena Valassi

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  • Iacopo Chiodini

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  • Richard Feelders

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  • Cornelie D. Andela

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