Issue 36 – Summer 2017
Issue 36 - Summer 2017
Bringing The Latest In Paediatric Endocrinology To You
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Editorial
Welcome
Welcome continued from page 1 Metabolism (DOM) School in Rome, Italy, in November. ESPE’s Fellowship Programme offers opportunities for both young and senior members to build their scientific, research and clinical careers in paediatric endocrinology. On page 6, Salah Azzi recounts the benefits of his recent ESPE Research Fellowship in Babraham, UK. ESPE is a very close-knit family, and many of you will be saddened to hear of the passing of Kerstin Hall, a pioneer in the field of growth hormone, insulin-like growth factor (IGF) and IGF-binding protein research. We thank Peter Bang and Martin Ritzen for providing her very eloquent obituary on page 7. We are especially excited to launch the ESPE Newsletter Photo Competition! This time, we invite you all to submit photographs on the theme of ‘Growing up’ and we hope you feel inspired to take some pictures. Send us your photo by 30 June for a chance to see it featured Finally, many of you will be interested in the ESPE membership statistics on page 6. We are now a truly global society, with 1219 members across 88 countries in 6 continents. If you would like to share your news please do so! We would be delighted to publish more stories from ESPE members; send contribuutions to espe@eurospe.org. I thank all the contributors to this issue, and the Editorial Board members for their hard work and enthusiasm. Yours sincerely, Dr Sarah Ehtisham, Editor, ESPE Newsletter Sarah.Ehtisham@mediclinic.ae
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Intro
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News
ESPE Update
THIS YEAR’S GATHERING in Washington, DC, USA, may still be some time away, but preparations have already started for the 2018 annual ESPE Meeting, which will be taking place in Athens, Greece on 27–29 September next year. Both the ESPE Council and the Corporate Liaison Board (CLB) met in the Greek capital recently. This visit gave sponsors an important opportunity to view the venue well ahead of the meeting. Regular readers of the ESPE monthly news alerts will have already read about this visit in the last Secretary General’s Update (you can find past updates at www.eurospe.org/ about/secretary_general.html). The monthly news alert is a great way to keep up to date with ESPE news. You can find the archive at www.eurospe.org/news/alert.aspx. During this year’s 10th International Meeting in Washington, DC, the ESPE Team will be based at the ESPE stand in the exhibition area. We will be managing our usual schedule of activities. ESPE is committed to ensuring the success of this meeting, and has endorsed the message from the Meeting’s President, David Allen, which you can find at www.eurospe.org/hid/ PES-International-Meeting-Letter.pdf. This message was written on behalf of the International Programme Organising Committee in response to the travel restrictions imposed by US President Trump. ESPE is very proud to have more than 1200 members across almost 90 countries, and we will do all we can to maintain very high quality clinical and scientific meetings open to all. Please let the ESPE Team know if you encounter problems arranging travel to the Washington meeting, and we will offer what practical assistance we can. We are pleased that the redevelopment of the ESPE website has moved into its final phase: content review. This, as you can imagine, is a huge task. It is being project managed by Indi Banerjee, an ESPE member
and former member of the Newsletter's Editorial Board. Over the past few weeks, with the help of the ESPE Team and Bioscientifica, Indi has been contacting ESPE Chairs and Co-ordinators for their help in reviewing their activity pages on the website, to ensure the content is fresh and relevant. We are excited to see the end result! If you would like to get more involved in some of ESPE’s activities, there is always an opportunity. Why not join a committee and help shape our portfolio of activities? We are always looking for new committee members, so please keep an eye on our vacancies page at www.eurospe.org/about/vacancies. Finally, we are now well into the 2017 renewal year, so don’t forget to renew your ESPE membership if you haven’t already – otherwise you won’t be able to access your many membership benefits! Just click on ‘Pay your membership fee’ at www.eurospe.org. Remember to also watch our website for dates and deadlines. Hannah Bonnell, Joanne Fox-Evans and Tracey-Leigh Meadowcroft, ESPE Team espe@eurospe.org
News
Edge of Growth and Maturation
EDGE OF GROWTH AND MATURATION is a website, started by a group of paediatric endocrinologists, to aid communication among scientists, and between scientists and the curious public, on issues related to child growth and maturation. Use of a blog platform gives the informal non-technical style of a conversation among peers. The conversations also involve people who are not engaged in research, many of whom have insights that could lead to scientific advancement. The site embraces the fact that many hypotheses come from groups of individuals at different career stages and with diverse interests. Recent conversations include: • Does the timing of puberty matter? • What discovery impressed you most during your career? • Bar Mitzvah and puberty during ancient times You can read the conversations, sign up to be alerted to new ones, and find out how to submit material at http://edge-growth-maturation.net.technion.ac.il. Ze’ev Hochberg, Technion – Israel Institute of Technology
News
European Reference
Networks launched
THE EUROPEAN REFERENCE NETWORKS FOR RARE DISEASES (ERNs) were officially launched in Vilnius, Lithuania, on 9 March. All 24 of the approved ERNs were inaugurated by the European Commission’s Directorate for Health and Food Safety, DG SANTE. The event was attended by approximately 600 representatives from healthcare providers (HCPs) across the EU, patient representatives, policymakers and health experts. Jean-Claude Juncker (President of the European Commission) and other high-ranking officials endorsed the ERNs, with their mission to achieve high quality healthcare for rare conditions in all EU member states. Endo-ERN The ERN for rare endocrine conditions (Endo-ERN) currently consists of 71 HCPs from 19 EU member states. It was highlighted in the approval process for several reasons. 1. As an all-encompassing network, caring for all rare endocrine conditions across all age groups, Endo-ERN was the only network to be represented by two Chairs at the inauguration: Alberto Pereira as Co-ordinator and Adult Chair, and Olaf Hiort as joint Co-ordinator and Paediatric Chair. 2. Endo-ERN has been planned with the highly active involvement of the major European endocrine societies, namely the European Society of Endocrinology (ESE) and ESPE, so emphasising its aim to involve major players in training, education, research and also clinical standardisation in rare endocrine conditions. 3. Endo-ERN has incorporated patient associations (European Patient Advocacy Groups, ePAGs) for a number of condition groups, to foster active participation of patient groups in the Network’s decision making. First meeting Endo-ERN held its first official meeting of all participating HCPs in Leiden, The Netherlands, on 27 March. Here, the governance structure was officially approved and Professors Pereira and Hiort were both endorsed as Chairs. The structure of the Steering Committee was also approved, with an Adult and a Paediatric Chair for each of the main thematic areas: • adrenal • sexual development and maturation • calcium and phosphate homeostasis • genetic disorders of glucose and insulin homeostasis • growth and genetic obesity syndromes • thyroid • pituitary • genetic endocrine tumour syndromes. The leaders of the work packages (Research and science, Quality of care and patient view, e-Health and ICT, Diagnostics and laboratory analysis, and Education and training) were also agreed. Patient association representatives were present, and currently their active placement into the governance structure is scheduled. Find out more news about Endo-ERN and its current work at http://endo-ern.eu. Olaf Hiort, Paediatric Chair of Endo-ERN
News
ESPE: supporting endocrine science
THE ESPE SCIENCE COMMITTEE HAS BEEN FOCUSING on a range of activities. In particular, it has standardised the information available and application processes for grants and awards. As well as reviewing all the byelaws, the content and structure of the website have been improved, so the purpose of each award, its target audience, the criteria and application process are clear. We thank Martine Cools and Tracey Leigh-Meadowcroft for their work on this project. News of other Science Committee initiatives is as follows. ESPE Science Symposia (supported by Pfizer) The annual ESPE Science School and the Advanced Seminars in Developmental Endocrinology have been merged into a single event. The revised format will probably consist of a short scientific symposium. A call for applications to host the event will be launched later this year.
ESPE Research Unit (supported by Sandoz & ESPE) Several grant applications were received before the recent deadline. Maria Street (Italy) is to become Research Unit Convenor later this year. We thank Irène Netchine (France) for her work in the role. Early Career Scientific Development Award (supported by Pfizer) The next deadline for applications for this award of up to €2500 is 31 July 2017. See www.eurospe.org/awards/awards_earlycareer _scientificDev.html for details. We thank Olaf Hiort (Germany), who will be stepping down as the Convenor of this award later this year, to be replaced by Marek Niedziela (Poland). For further details of these and other ESPE science awards and activities see www.europse.org/awards.
News
Plenary Reviews
We are delighted to provide you with highlights of two of the plenary lectures from the forthcoming 10th International Meeting of Pediatric Endocrinology, Washington, DC, USA, 14–17 September 2017
Establishing paediatric and adolescent endocrinology care in developing countries: experience from Sudan IN DEVELOPING COUNTRIES, malnutrition and infectious diseases remain the main causes of morbidity and mortality among children. However, recent studies have shown that non-communicable diseases are creating another burden. The importance of delivering expert endocrine and diabetes care to children and adolescents in these countries must be emphasised. In Sudan, a paediatric and adolescent service was started in 2005, from scratch. Over 12 years, we built up a clinic with almost 5000 endocrine cases and 3000 with diabetes. Various multidisciplinary staff members were locally trained, along with 12 paediatric endocrinologists in the PETCA (Paediatric Endocrinology Training Centre for Africa) programme. Anthropometric tools were made from local materials, and an endocrine laboratory was established with the help of the World Diabetes Foundation (WDF). Management guidelines and protocols were written in addition to health education materials. Attempts were made to secure medications, and pressure was put on the government Prenatal environment and medical consequences IN A VARIETY OF SPECIES, changes in prenatal nutrition cause substantial changes in structure and function. Classic examples include the locust, dung beetle and rodents, where nutritional restriction leads to dramatic phenotypic changes in the subsequent generation. Perturbations in human prenatal nutrition have also been shown to result in metabolic and body composition changes in subsequent generations. For instance, being born small for gestational age (SGA) or preterm (defined as less than 37 weeks’ gestation) results in a reduction in insulin sensitivity in childhood, manifesting as an increased risk of metabolic syndrome-related diseases in later adult life. These include type 2 diabetes mellitus, hypertension, dyslipidaemia, ischaemic heart disease and stroke. There is also a clear association between the development of obesity and a marked increased risk of later adult disease, with increased weight and obesity more common in those born preterm and SGA. The risks of increased weight gain are also apparent in the next generation and specifically in otherwise healthy children born at term but having a parent born preterm. Other pregnancy-related conditions that lead to transient or persistent utero-placental insufficiency have been shown to impact on children and adolescents and consistently cause a reduction in insulin sensitivity. These include first born children, hyperemesis gravidarum and post term delivery (defined as a gestational age greater than 42 weeks’ gestation). Interestingly, there are usually sex-based differences, with males generally having greater metabolic dysfunction. to secure some expensive drugs such as growth hormone and free insulin. Multidisciplinary clinics for bone and disorders of sex development were created, in addition to special adolescent and transitional clinics. With help of the WDF, we established 25 diabetes clinics in all states of Sudan. Meters and strips are secured for those who cannot afford them by the Sudan Childhood Diabetes Association. This was achieved through raising local funds, the Sudanese Childhood Diabetes Association, the Government, and help from international organisations such as ESPE, ISPAD (International Society for Pediatric and Adolescent Diabetes), WDF, IDF (International Diabetes Federation), ASPAE (African Society for Paediatric and Adolescent Endocrinology), ASPED (Arab Society for Paediatric Endocrinology and Diabetes), GPED (Global Pediatric Endocrinology and Diabetes) and Novo Nordisk. One of our main recent achievements was building the Sudan Childhood Diabetes Centre as a center of excellence for service, training, education and research. Mohamed A Abdullah Faculty of Medicine, University of Khartoum, Sudan Surprisingly, prenatal overnutrition, characteristically due to maternal obesity or gestational diabetes, also results in metabolic and body composition abnormalities similar to those identified in those suffering prenatal undernutrition. Indeed, prenatal overnutrition and the subsequent effects on the affected children and youths are becoming a major factor in youth obesity and type 2 diabetes onset. To reduce prenatal overnutrition, a number of nutritional and exercise interventions have been attempted during pregnancy. While these have been successful in reducing birth weight, there has been a disappointing worsening in metabolic and body composition outcomes. The focus probably needs to be on preconception rather than pregnancy interventions, although more long term outcome data are needed. In summary, the prenatal environment appears delicately poised, with any alteration resulting in over or undernutrition impacting not only on the offspring but on subsequent generations. Paul Hofman Starship Children’s Hospital, Auckland, New Zealand
ESPE Activities
Bringing you recent highlights from the world of research
ESPE Activities
Paediatric endocrinology
training for North Africa:
the ESPE Maghreb School
THE ESPE MAGHREB SCHOOL PROGRAMME promotes the training and education of young paediatric endocrinologists in the French speaking countries of North Africa, where the opportunities for local training are limited. The School has taken place annually since 2011 at locations in Morocco, Tunisia and Algeria. The most recent ESPE Maghreb School took place in Tunis, Tunisia, on 22–27 November 2016. We warmly thank Mongia Hachicha, the local organiser, for her commitment, which helped to make this event a great success. Of the 47 applications we received in 2016, 33 students were selected and 29 (12 new participants) took part: 11 from Algeria, 7 from Tunisia, 9 from Morocco, 1 from Republic of Congo and 1 from Djibouti. Ten students attended their third ESPE Maghreb School. The 4½-day meeting had an atmosphere of warm friendship and great enthusiasm. The French-speaking programme covered growth and pituitary disorders, adrenal and calcium diseases, gynaecology, obesity and diabetes mellitus. As previously, the meeting consisted of interactive lectures, case presentations from each student, teachers’ cases, small group workshops discussing research projects and proposals from the students, and the presentation of selected projects to the plenum. On the third day of teaching, a half-day excursion visited the famous ‘Bardo museum’ and old Tunis city. For the third time at an ESPE Maghreb School, the 2016 meeting featured a ‘Maghreb Paediatric Endocrinology Seminar’ on the last day. This was organised in collaboration with students and teachers from the Maghreb, who gave oral and poster communications on their own clinical research data (250 participants this year). Since the ESPE Maghreb School was established, 12 students have spent 3 months training in paediatric endocrinology at European centres, and one student from Tunisia plans to go to Paris, France, as part of the ESPE Clinical Fellowship Programme. Several abstracts were also successfully presented by students at the ESPE Meeting in 2016.
As well as the course, there is also a web-based educational programme in French, where students can refer to slides from the conferences and case presentations (available for participants only at http://endocrinologie-enfant.net). We acknowledge Pfizer’s generosity in funding the Maghreb Programme, and are very grateful for their agreement to a further extension. The next ESPE Maghreb School will be held in Morocco on 14–18 November 2017. The Co-ordinator will be Malcolm Donaldson. For more information see www.eurospe.org/education/ education_maghrebProject.html. Juliane Léger, Co-ordinator, ESPE Maghreb School 2016 We are grateful for the support provided to the 2016 ESPE Maghreb School by the teaching faculty: ESPE members: Jean-Pierre Chanoine (Canada), Malcolm Donaldson (UK), Claudine Heinrichs (Belgium), Christina Kanaka (Greece), Juliane Léger (France) Teachers from the North African countries: Mongia Hachicha, Sayda BenBecher and T Kamoun (from Tunisia), Ashmahane Ladjouze (from Algeria), Farida Jennane (from Morocco), and two new teachers (previous students of the programme), Sana Abourazzak (Morocco) and Meriem Bensalah (Algeria)
ESPE Activities
ESPE Diabetes, Obesity & Metabolism School 2017
THE ESPE DIABETES, OBESITY & METABOLISM (DOM) SCHOOL provides up-to-date teaching in selected areas of the discipline, to promote discussion and interaction between younger and more senior colleagues and to develop the next leaders in paediatric endocrinology. The 4th DOM School will take place in Rome, Italy, on 9–11 November 2017. The course will include interactive lectures by experienced ESPE members, supplemented by small group sessions to discuss teachers’ cases and case presentations by the students. There will also be an introduction to clinical research, with students presentating research proposals and projects in small groups, and presentation of selected work to the plenum. Application forms and full details of how to apply can be found at www.eurospe.org/ education/education_diabetesandobesity.html. There is no registration fee. Applications should be sent to the School Co-ordinator, Moshe Phillip (moshephillipoffice@gmail.com), by 30 June 2017. Successful students will be notified of their acceptance by 31 July 2017.
ESPE Activities
Interview with
an ESPE Fellow
why did you apply for an ESPE Fellowship? My research in the Molecular Endocrinology Department at the Armand Trousseau Hospital in Paris, France, focused on studying human imprinting disorders (IDs) to identify the molecular mechanisms leading to these complex diseases. Studying several cohorts of patients led to significant discoveries, enhancing our understanding of the pathophysiology of these syndromes and improving molecular testing. Despite intensively studying different IDs, the molecular mechanisms governing their pathophysiology were still not entirely clear, mostly because only limited patient samples were available to study (only leukocytes and sometimes fibroblasts). Consequently, I applied to the ESPE Research Fellowship Programme to join Gavin Kelsey’s lab in the Epigenetics Department at Babraham and work on a unique mouse model of a human ID, transient neonatal diabetes mellitus (TNDM). What did your Fellowship involve? Soon after I joined the lab, I applied for a personal licence to be able to work on animal models. This involved attending theoretical training courses provided by the UK Home Office and practical courses provided by the animal facility at the Babraham Institute. After obtaining my licence, I inherited the management of the colony. My duties included controlling the number of mice in the colony, setting up new breeding pairs and ordering mice for my different experiments. It was an exciting experience! I have been involved twice in days for schools, organised by the Babraham Institute Public Engagement Team. During these events, students from colleges visit the Institute and take part in lab-based projects with a discussion about careers. I have also participated in many seminars organised by the Epigenetics Department. This gave me more confidence to present my work subsequently in national and international conferences. Interview with an ESPE Fellow: Salah Azzi What did you gain from your Fellowship? My Fellowship was an exciting experience, which provided great knowledge, flexibility and independence. I have gained strong communication skills as well as learning a wide range of techniques, particularly next generation sequencing. Working on animals allowed me to investigate the molecular mechanisms of different clinical aspects of the TNDM, and identify valuable questions that I can follow up in the future. My Fellowship opened up new perspectives, and changed my way of thinking and how I want to carry on in research. What was the best thing about your Fellowship? I thoroughly enjoyed interacting with different groups and discussions around different projects. The other thing I liked very much is that, having had no previous experience at all in animal experimentation, I never felt left on my own when there was any difficulty, particularly at the beginning of my Fellowship. For this I am very grateful to all those colleagues who helped me during this wonderful experience. How could the ESPE Research Fellowship Programme be developed or improved? I think 2 years is too short, and that the Fellowship should be extended to 3 years – or at least the possibility of an extension could be considered to allow delivery of the outcomes of the project.
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