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Reaching new heights

Medical education case study: increasing understanding of Severe Primary IGFD with endocrinologists worldwide

Until recently, growth hormone was the only treatment available to promote growth in pre pubertal children. Most children with growth hormone (GH) deficiency have low levels of IGF-1, however those with Severe Primary IGF-1 Deficiency (IGFD) may have barely detectable levels and do not respond to traditional GH treatments. Severe Primary IGFD is a newly emerging aspect of short stature requiring early identification and appropriate treatment to ensure the best patient outcome.

Increase confidence among the international endocrinology audience to diagnose and treat Severe Primary IGFD effectively by creating an ongoing opportunity to interact and share the experience of the key opinion leader group driving research and clinical studies in this area.


A screenshot of the IGFD website with the forum webcasts
Webcasts of forum presentations, highlights and speaker interviews featured on the IGFD website


To initiate conversation and discussion among endocrinologists across Europe and the US on Severe Primary IGFD, a vehicle to facilitate communications was required. IGFD-forum was launched early in 2009 and specialists in this field were directed to the site with 'Save the Date' cards, invitation cards and e-shot reminders.

The lively website encouraged registration for an international forum in May and provided the opportunity to interact with KOLs to shape the agenda and post questions for consideration by the panel. The website also set out learning objectives so that endocrinologists could see how the forum content could inform their clinical practice.

The forum agenda comprised scientific data presentation, exchange of clinical experience via patient case studies, a patient video and workshops as well as a Q&A session moderated by renowned US endocrinologist, Professor Ron Rosenfeld.
Chaired by two leading paediatric endocrinologists: Professor Martin Savage, Barts and the Royal London School of Medicine & Dentistry, London, UK; and Professor Philippe Backeljauw, University of Cincinnati College of Medicine, Cincinnati, US, the speaker faculty also comprised specialists from France, the Netherlands, Spain, Sweden and the UK.

A compelling video illustrated the case of the first UK patient diagnosed with Severe Primary IGFD and treated with Recombinant human insulin-like growth factor-I (rhIGF-I), Increlex. Introduced by Professor Faisal Ahmed, Royal Hospital for Sick Children, Glasgow, Scotland, delegates heard how a 10-year-old girl was treated with this therapy. At first presentation, she was markedly short for her age and had considerable bone age delay. Following two years of treatment with Increlex, she made excellent progress with a height velocity that had increased from 3.3cm/year to 7cm/year together with greater self confidence as a result of her increased stature.

"On the surface, it seems that every child with growth hormone deficiency is exactly the same, but this is not necessarily the case and IGF-1 deficiency should be considered in patients who do not respond to GH therapy," commented Professor Ahmed. "Once diagnosed, treatment should be combined with counselling for the patient and their family to help with issues they are likely to face in daily life."  

81 endocrinologists from 12 European countries and the US attended the 2nd IGFD Forum in Barcelona which was accredited by the European Accreditation Council for Continuing Medical Education (EACCME). Webcasts of the presentations and keynote interviews were posted onto the website for further review by delegates. To date, the website has attracted 1,066 unique users with a total hit rate of 4,655.

After the forum, short highlights and full proceedings reports were produced in both print and web versions. The patient story shown at the Forum was also produced on DVD for use in the UK and Spain to provide support and guidance to patients and their families.

A key pad voting session at the Forum showed 100 per cent of delegates felt more confident in diagnosing and treating Severe Primary IGFD as a result of the programme.  A majority indicated they were considerably more confident in specific areas:
• 80 per cent felt 'considerably more confident' in identifying patients who may have Severe Primary IGFD
• 65 per cent were 'considerably more confident' in diagnosing Severe Primary IGFD
• 75 per cent were 'considerably more confident' in using rhIGF-1 (Increlex) in patients diagnosed with Severe Primary IGFD.

Delegates ranked content of the expert data presentations at five out of a possible six (where one is low and six is high). They were also asked to rate to what extent the learning objectives set at the beginning of the year had been met, equipping them with:
• Skills to recognise Severe Primary IGFD
• Improved knowledge of therapeutic options available
• Good understanding of the impact of non-therapeutic options
• Practical knowledge of Severe Primary IGFD through exchange of shared experience.

Scores across all these objectives were in excess of 75 per cent (19 out of a possible 24) demonstrating delegates felt they had gained a good appreciation of this new aspect of short stature.


Case study details

Client: Ipsen Pharmaceuticals
Agency: echo (medical education) and Haymarket Medical Imprint (web)
Campaign: 2nd IGFD Forum
Timescale: January 2009 to May 2009

29th April 2010


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