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Welcome to issue 32 DEAR FRIENDS AND COLLEAGUES, It is at this time of year that we enthusiastically await the coming ESPE Meeting, this year in September in Paris. The scientific programme is ready, and is sure to provide an excellent experience for all paediatric endocrinologists, which will enrich our academic lives! We wish the President of the congress, Jean-Claude Carel, and the Organising Committees every success. You can read more about the ESPE 2016 Meeting in Paris on this page and on page 4. One other very interesting item of news for the paediatric endocrine community is the establishment of the European Reference Network (ERN) for Rare Endocrine Conditions (see page 2). The call for the first ERNs was launched in March 2016. This initiative will undoubtedly increase our understanding of rare disorders by sharing our knowledge and experienc You can find details of another exciting development below: the International Classification of Pediatric Endocrine Diagnoses (ICPED) website, which you can reach at http://icped.org. This will also be of great help in harmonising the management of paediatric endocrine disorders. The formation of the ESPE Science Committee brings all ESPE’s scientific endeavours under one umbrella. Committee Chair Faisal Ahmed outlines all the details on page 3. Meanwhile, news from the 2016 ESPE Winter School and the 2nd ESPE Caucasus & Central Asia School can be found on page 5. Both schools are very popular among young fellows from all around the world. We continue to bring you recent news from the ESPE Working Groups. Page 4 features an update from the ESPE Diabetes Technology Working Group, by Moshe Phillip. We hope it is useful for colleagues interested in this field.Last but not the least, you can learn more about the work of prize winners from ESPE 2015, as President Poster Award recipients Mesut Parlak and Daniele Tessaris outline their research (page 6). We congratulate these young academicians. If you would like to share your news or news from your national societies please do so! We would be delighted to publish more stories from ESPE members. We thank all our colleagues who have contributed to this issue of the Newsletter, and I thank the Editorial Board members for their hard work and enthusiasm
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THE CALL FOR THE FIRST European Reference Networks (ERNs) was launched in March 2016, with applications due in June. An ERN will share expertise; improve diagnosis; educate and train patients, care providers and doctors; produce guidelines; build databases; develop connections to facilitate research; perform clinical trials; disseminate results to patients, healthcare providers and public health organisations; and link up with other ERNs. It is formed of centres approved in their own countries as healthcare providers (HCPs), according to standard criteria. Approved HCPs are eligible to join an ERN. A bid to form an ERN must come from a single HCP with a named co-ordinator, along with all the HCPs of centres that will make up the ERN. Vital for endocrine care Both ESPE and the European Society of Endocrinology (ESE) view an ERN for Rare Endocrine Conditions (Endo-ERN) as vital for improving the care of people with any of the diverse range of rare endocrine conditions from birth through adulthood that are managed by the members of the two societies. ESPE has selected Olaf Hiort (University of Lübeck, Germany) and ESE has chosen Alberto Pereira (University of Leiden, The Netherlands) to develop the structure of an Endo-ERN. The Endo-ERN will cover eight main thematic groups, namely: • Adrenal disorders • Conditions of sex development and maturation • Disorders of calcium and phosphate homeostasis • Genetic disorders of glucose and insulin homeostasis • Rare disorders of: • growth • thyroid • pituitary • Genetic endocrine tumour syndromes. The Network activities of the Endo-ERN are divided into work packages covering: • Research and science • Quality of care and patient views • e-Health and ICT • Diagnostics and laboratory analysis • Education and training. Progress to date Currently, most EU member states are endorsing eligible HCPs for application to the ERN process. Olaf and Alberto and their teams have named Chairs for every main thematic group (each will have paediatric and adult co-leads), and also for each of the work packages. These will define the requirements for participation with the application of each HCP and will form the core group of the Writing Committee for the Network application. It is anticipated that the (hopefully successful) Endo-ERN will come into operation by the beginning of 2017. Regular audits and re-assessments will ensure a high quality of care in each participating HCP and will also allow further institutions to participate in the future. For any enquiries, please contact RareEndoERN@Lumc.nl. Olaf Hiort and Ulla Döhnert University of Lübeck, Germany
ESPE IS DELIGHTED TO ANNOUNCE that the International Classification of
Pediatric Endocrine Diagnoses (ICPED) website is now live at http://icped.org.
ICPED is based upon the original work of ESPE members, which has undergone
extension and revision since 2011.
The ICPED Consortium was formed by eight global societies, including ESPE,
and has benefited from contributions from more than 60 paediatric
endocrinologists. ICPED is a unique classification system for paediatric
endocrinology, which aims to provide a global resource that can be used to
promote consistency of terminology and to facilitate international collaborative
research projects.
To promote alignment with other terminology systems, ICPED has been
provided to the World Health Organization International Classification of
Diseases (Version 11) Development Team, and to the National Institutes/National
Center for Biotechnology Information of Health Pediatric Terminology Project as
the basis for their terminology updates and development programmes.
We hope that you find ICPED a useful tool. Please do provide feedback (via
the ‘support’ link on the site), so that it can be continually improved.
THE START OF THE YEAR has been busy, as always. One activity we have focused on is reviewing the ESPE membership survey results. The results have given us a valuable insight into your priorities, and these will help shape the Society’s future activities. Please take some time to review the results yourself, at www.eurospe.org/members/ documents/docs/ESPESurveySummary.pdf. Thank you for taking part and giving us your feedback. You can still give feedback at any time during the year by emailing us at espe@eurospe.org. Your thoughts and opinions are always welcome. One project for the forthcoming year is redevelopment of the ESPE website. This huge project will require your help please! It is still in the very early stages. We will keep you updated and let you know how and when you can get involved. ESPE has many activities and programmes available for members throughout the year. With such a variety, there really is something to suit every member at every stage of their career. Please visit www.eurospe.org to find out more about the education and training opportunities, prizes and awards, fellowships career development awards and online learning activities. All the programmes are designed to help you continually develop in your careers as paediatric endocrinologists. For upcoming application deadlines you can always stay informed by referring to the back page of the ESPE Newsletter, and also the ‘dates and deadlines’ section at www.eurospe.org, as well as the monthly ESPE news alerts and via Facebook and Twitter too. And finally, don’t forget to tell your colleagues about the benefits of ESPE membership!
ESPE’S SCIENCE COMMITTEE was created with three broad aims in mind: a) to facilitate the collaborative scientific activity of ESPE members b) to increase participation by the wider ESPE membership in scientific activities c) to optimise opportunities for the scientific development of ESPE members at all stages of their careers. The Committee’s structure incorporates existing ESPE activities that had these objectives. All Committee members have specific roles, and the Committee is led by Faisal Ahmed (Chair) and Martine Cools (Deputy Chair). ESPE Research Unit (ESRU) CONVENOR: Irène Netchine; supported by Sandoz & ESPE The ERSU will continue to support collaborative initiatives, but will aim to support one large research project and one small project. ESPE Science Workshop CONVENOR: Nicolas de Roux; DEPUTY CONVENOR: Martin Wabistch; supported by Pfizer The ESPE Science School and the Advanced Seminars will be merged into an annual Science Workshop. This will probably consist of a small training school followed by a symposium. A call for applications for the 2017 Science Workshop will be launched in summer 2016. Early Career Scientific Development Award CONVENOR: Olaf Hiort; supported by Pfizer This award, previously known as the Visiting Scholarship, offers financial support to ESPE members or their collaborators in the early stages of their careers, so they can gather experience in a specific research issue or a laboratory technique in paediatric endocrinology. Mid-Career Scientific Development Award CONVENOR: Outi Mäkitie; supported by Lilly This award, formerly known as the Sabbatical Leave Programme, supports senior ESPE members who are seeking an opportunity for scientific development. ESPE Research Fellowship CONVENOR: Katharina Main; supported by Novo Nordisk This will support future academics in paediatric endocrinology by funding a salary and consumables for up to 2 years of advanced research which allows the fellow to obtain experience in a research environment other than their own. These members of the Science Committee meet every 3 months. At the annual ESPE Meeting, they are joined by ex-officio members representing the ESPE Council, IFCAH (International Fund-raising for Congenital Adrenal Hyperplasia), the Programme Organising Committee, Hormone Research in Paediatrics and Enpr-EMA (the European Network of Paediatric Research at the European Medicines Agency). In addition, the Committee relies on an Expert Panel for peer review.
Bringing you recent highlights from the world of research
MANAGEMENT OF TYPE 1 DIABETES is a challenge for both patients and healthcare providers. The use of advanced medical devices, such as insulin pumps and sensors, has a significant impact on monitoring and management of patients with type 1 diabetes, by improving their glucose control. Yet, they still need to intervene in the treatment. Furthermore, the majority of patients worldwide are still not achieving the desired glycaemic control, mainly as a result of their fear of hypoglycaemia, and the anxiety associated with using these devices. Automated insulin delivery systems (known as closed-loop or artificial pancreas systems) have been a focus of diabetes research over the past few years, and have been shown to improve the patients’ glycaemic control, as well as their quality of life. These consist of a continuous glucose monitor, insulin pump and an automated control algorithm to bridge communication. The closed loop systems were tested in many clinical studies, starting with short term research in hospital, progressing to studies at home with close monitoring and at home in free-living conditions. New technology should help us improve diabetes control in the face of an increased number of patients and the limited availability of well trained and experienced professionals. Technology for data management and software tools put the patient at the centre of treatment. The individual patient’s information regarding treatment and insulin/glucose response data are largely available from devices such as pumps, sensors, glucose meters and fitness apps. Data can be entered into a decision support system, which helps the physician in the clinic and patients in their homes. It is transformed into meaningful treatment information, changing the way diabetes is managed. The Yearbook on Advanced Technologies and Treatments in Diabetes (known as the ATTD Yearbook) is an important publication which gives an extensive overview on this topic. It summarises the most important articles in the field of diabetes technology and treatments, with short summaries from key opinion leaders. The seventh edition of the ATTD Yearbook (for 2015) is edited by Moshe Phillip and Tadej Battelino and published by Mary Ann Liebert, Inc. This edition and the previous ATTD Yearbooks can be freely downloaded via www.attd2016.com/conference-information/attd-yearbook. Moshe Phillip, Co-ordinator, ESPE Diabetes Technology Working Group mosheph@post.tau.ac.i
WINTER SCHOOL WAS HELD IN truly cold and snowy circumstances at Sagadi Manor, a forest museum 86km to the east of Tallinn, Estonia, in the first national park established in the old Soviet Union. We had received 52 applications for the 25 places available, and selected a range of excellent applicants from 14 countries, with a focus on north-eastern Europe and Russia, which we were targeting. It was a shame, yet again, to turn down so many good candidates. As usual, we had a very full teaching schedule, covering all the major endocrine systems of relevance to paediatrics, as well as presentations on ‘Late effects of the treatment of childhood cancer’ and a session on research and audit. A new session saw teachers role playing a challenging consultation, to demonstrate skilful communication; this was well-received. Student feedback was good, with the interactive teachers’ cases scoring very highly, as always. In addition to the formal teaching, we enjoyed a half-day excursion to the Baltic Sea coast, for a snowy walk in the countryside. I acknowledge and thank our host, Vallo Tillmann, for his hard work in locating the excellent venue (within our budget) and for ensuring the Winter School’s success. I also thank Ferring for their long-established grant which has allowed the School to take place each year, covering both hotel and delegate travel costs. This is greatly appreciated by ESPE and by the students. With great sadness, we say goodbye to Margaret Zacharin (Melbourne, Australia) who has completed her term as teacher. We will miss her encyclopaedic knowledge of clinical endocrinology and her expertise in jewellery making! As well as Margaret, I thank the other members of this year’s teaching faculty: Justin Davies (Southampton, UK), Serap Turan (Istanbul, Turkey), Veronique Beauloye (Louvain, Belgium) and next year’s host tutor Galina Popova (Sofia, Bulgaria). I strongly encourage all trainees in eastern Europe who are committed to a career in paediatric endocrinology to apply for next year’s Winter School in Bulgaria. Watch out for details in the ESPE Newsletter and on the website. We will particularly welcome applications from trainees in south-eastern Europe, including Bulgaria, Romania and the former Yugoslav Republics. We are also advertising for a teacher to replace Margaret Zacharin (page 6). I welcome expressions of interest from those with a passion to teach clinical paediatric endocrinology to a group of wonderfully motivated students. John Gregory ESPE Winter School Co-ordinator
THIS POPULAR ESPE TEACHING COURSE was conducted in two languages – Russian and English – particularly for the benefit of students from Central Asian countries. The 4-day course covered most paediatric endocrine topics, in the form of lectures, interactive clinical cases and research project presentations by students. Attendees greatly appreciated the teachers’ clinical case discussions in small groups. Importantly, the e-Learning Programme introduced a novel educational approach, with main topics available in Russian. For the whole year following the School, PDF files of all the lectures will be available for course participants at the C&CA section of the e-Learning Portal. A total of 26 fellows from Uzbekistan, Kazakhstan, Tajikistan, Armenia and Russia were selected from more than 40 applications on the basis of clinical and academic experience. This year, we gave preference to students from Uzbekistan, and were keen to build on the success of the 2014 Caucasus & Central Asia School in Almaty, Kazakhstan, by encouraging further applicants from other countries in the Caucasus and Central Asia region. The teaching faculty comprised both English- and Russian speaking teachers: Gunduz Ahmadov (Azerbaijan), Rimma Bazarbekova (Kazakhstan), Francesco Chiarelli (Italy), Sten Drop (The Netherlands), Alina German (Israel), Jan Lebl (Czech Republic), Gulnora Rakhimova (Uzbekistan) and Rasa Verkauskiene (Lithuania). The course was very successful, and greatly appreciated by fellows and faculty members. Participants also enjoyed an excursion to Samarkand, one of the oldest inhabited cities in Central Asia. All Caucasus & Central Asia School fellows were offered ESPE membership free of charge for 1 year following the School. The ESPE Educational Programme for countries in the Caucasus and Central Asia has been approved by ESPE Council, initially for 3 years. It is generously supported by Ferring Pharmaceuticals a/s. The 3rd ESPE Caucasus & Central Asia School will take place in Baku, Azerbaijan, on 18–23 October 2016.
NEUROKININ B AND KISSPEPTIN APPEAR to play major roles in puberty. In this research, we investigated the diagnostic roles of kisspeptin and neurokinin B in central precocious puberty (CPP) and premature thelarche (PT). Girls who presented with breast development at between 5 and 8 years of age were included the study. Basal serum follicle-stimulating hormone (FSH), luteinising hormone (LH) and oestradiol and peak FSH and LH were measured after a gonadotrophin-releasing hormone test. Patients with peak LH>5mIU/ml and a bone age (BA)/chronological age (CA) ratio>1 were diagnosed as having CPP, while others were designated as having PT. Organic pathologies were excluded. Healthy, similar age prepubertal girls were included as a control group. We measured neurokinin B and kisspeptin levels by ELISA; 25 subjects with CPP, 35 with PT and 30 controls were included. BA, BA/CA ratio, basal LH and peak LH were significantly different between the CPP and PT groups (P<0.05). Serum kisspeptin and neurokinin B levels were detected as 2.36±0.47ng/ml and 2.61±0.32ng/ml respectively in CPP, 2.23±0.43ng/ml and 2.24±0.23ng/ml respectively in PT and 1.92± 0.33ng/ml and 2.03±0.24ng/ml respectively in controls. We found that kisspeptin and neurokinin B levels were significantly higher in the CPP and PT groups than in controls (P<0.05), suggesting they have a major role in the initiation of puberty. Moreover, the neurokinin B level was significantly different between the CPP and PT groups (P<0.01), while no significant difference was found in the kisspeptin levels. A neurokinin B value of 2.42ng/ml provided the most appropriate level, with a sensitivity of 84% and specificity of 77.1%, for differential diagnosis of CPP and PT. These findings lead us to suggest that neurokinin B could be used to differentiate between CPP and PT WE AIMED TO DETERMINE THE prevalence and characteristics of growth hormone hypersecretion (GHH) in McCune–Albright syndrome (MAS). Screening for GH excess in two cohorts of MAS patients identified 3 cases out of 34 in an Italian cohort (8.8%) and 28 cases out of 129 (21.7%) in a group from NIH (Bethesda, MD, USA). We gathered auxological data, biochemical GHH measurements (insulin-like growth factor-I Z score, random GH and GH after oral glucose tolerance test), plus details of association with prolactin hypersecretion, possible abnormal pituitary MRI scan, bone fibrous dysplasia (FD), and response to medical and other treatment. Thirty cases of MAS with GH excess were matched with 30 MAS controls without GH excess for sex, age and total bone scan score on Tc-99m bone scintigraphy, to evaluate any association between comorbidities and GHH. Finally, patients with GH excess were divided into two groups: group A (17 cases with MAS, therapy before 20 years of age) and group B (13 cases of MAS, no therapy or therapy after 20 years of age). Evidence of a pituitary adenoma was found in 52%, while craniofacial and long bone FD were evident in all. Medical treatment was performed in 25 out of 31 patients (octreotide 10–30mg i.m./month or octreotide 30mg i.m./month and pegvisomant 20mg s.c./day). Craniofacial comorbidities (facial asymmetry, head circumference expansion, optic neuropathy and hearing deficit) were increased in patients with GH excess. We concluded that GH excess is present in about 20% of MAS patients; 74% also have hyperprolactinaemia. The MAS phenotype with GHH is more severe because it is always associated with craniofacial FD, head circumference expansion and more comorbidities. Pain is not affected by GHH. Early therapy should be effective in preventing optic neuropathy. Further data are necessary to demonstrate the efficacy of therapy for other comorbidities and to correlate bone turnover markers with GHH.
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