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Welcome to issue 35 DEAR FRIENDS AND COLLEAGUES, I would like to introduce myself as the new Editor of the ESPE Newsletter and to thank the outgoing Editor, Professor Feyza Darendeliler, for all her hard work over the last few years. After a successful and memorable ESPE Meeting in Paris, the preparations for the next annual meeting in Washington, DC, USA, in September 2017 are underway. This will truly be an International Meeting of Pediatric Endocrinology, bringing ESPE together with the other international societies. Our host, and President of the International Meeting, is Professor David Allen from Madison, WI, USA. We wish him and the organising committee every success! You will find a message from David on this page, and further news will follow in future issues of the Newsletter. On page 2, you will find exciting information about the Global Fellows Program, which takes the place of the ESPE Summer School this year. The application deadline is very soon, on 1 March, so please remind eligible trainees to apply. Page 2 also features information about ESPE grants. The Mid-Career Scientific Development Award offers three grants of up to €25 000, while the Research Unit Grants comprise two awards of up to €130 000 and €15 000, with Welcome continued from page 1 imminent application deadlines! The European Reference Network for Rare Endocrine Conditions (ERN-ENDO) has recently been approved. This exciting development promises to strengthen collaboration between units and improve patient experience and care. You can read more on page 3. The Working Group sessions at ESPE 2016 were productive as always, and pages 4–6 feature informative updates from the Co-ordinators of the ESPE Working Groups for Obesity, Paediatric Endocrine Nurse Specialists, Turner Syndrome, Paediatric and Adolescent Gynaecology, and Diabetes Technology and Therapeutics. Please contact them to find out more or to get involved. On page 7, Moshe Phillip updates us on the third ESPE Diabetes, Obesity and Metabolism (DOM) School. You can apply now for a place at this year’s event, in Rome, Italy, on 9–11 November. The same page also has an update on the journal Hormone Research in Paediatrics. We congratulate Stefano Cianfarani, Editor-in-Chief, for increasing the article submission rate and for improving its citation rate and impact factor. We thank all our colleagues who have contributed to this issue of the Newsletter. I am very grateful to the Editorial Board members for their hard work and enthusiasm. Please get in touch with your ideas for articles and your feedback.
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ThE 2017 GLOBAL FELLOWS PROGRAM in Pediatric Endocrinology takes the place of the ESPE Summer School this year, just before the 10th International Meeting of Pediatric Endocrinology. The event will: • provide up to date teaching in carefully chosen areas • practise critical thinking skills • offer the chance to present cases to faculty and peers • promote discussions and networking between younger and more senior physicians, and • develop the next leaders in paediatric endocrinology. Lectures, discussions and interactive case presentations will be accompanied by activities for relaxation, team-building and socialising. docrinology training, and still be in training at the time of the course. They should not have previously attended a similar event (e.g. the ESPE Summer School, PES Fellows Retreat, APPES Fellows School, etc.). Applications should include a CV with publications and a letter of recommendation by a current supervisor/programme director or other member of one of the sponsoring societies. You can find out more at www.eurospe.org/education/summer/ 2017/FellowsProgramAnnouncement-RIG.pdf or from [email protected]. The event is supported by an educational grant from Ferring. Please note that the deadline for applications is 1 March 2017
WE ARE DELIGhTED TO WELCOME Dr Sarah Ehtisham as the new Editor of the ESPE Newsletter. Sarah is a paediatric endocrinologist at the Mediclinic City hospital in Dubai, United Arab Emirates. She graduated from the University of Cambridge, UK, and undertook her clinical training at Addenbrooke’s hospital in Cambridge. She was clinical lead for diabetes at the Royal Manchester Children’s hospital, UK, and an honorary lecturer in endocrinology at the University of Manchester. Sarah was also a member of the Royal College of Physicians Working Party on Obesity, part of the All Party Parliamentary Group on Obesity, which meets regularly at the house of Commons in London, UK. her interests include: • childhood diabetes, including non-type 1 diabetes • bone and calcium disorders • disorders of sexual differentiation. We look forward to working with Sarah, who welcomes comments and ideas from all ESPE members. You can contact her about Newsletter related matters at [email protected]
Support for mid-career scientists! Are you an ESPE member aged 40 or over? Would you relish an opportunity to spend up to 12 months abroad developing your experience and skills? Then read on... ESPE’s Mid-Career Scientific Development Award will support you for up to a year in another country, to develop new research projects and gather new ideas, to strengthen old and new collaborations and to learn new skills. Each year, awards are available of up to €25 000 each for three applicants. The next application deadline will be soon. For details see www.eurospe.org/awards/ awards_midcareer.html or contact Outi Mäkitie ([email protected]), the Mid-Career Scientific Development Award Convenor. This award is generously supported by Lilly International Corp., USA, and was previously known as the Sabbatical Leave Programme. Changes to ESPE Research Unit Grants The ESPE Research Unit, generously supported by Sandoz, awards grants annually to support collaborative research among ESPE members. Two grants will now be available each year: a large grant of up to €130 000 (for 2 years), and a smaller grant of up to €15 000 (for 1 year). You can find details and how to apply at www.eurospe.org/science/research.html or contact the ESPE team at [email protected]. Preliminary application deadline: 27 February 2017 Final application deadline: 17 April 2017
WE ARE DELIGhTED TO REPORT that the European Reference Network for Rare Endocrine Conditions (ERN-ENDO) was approved by the Board of Member States on 15 December 2016. The successful application, co-ordinated by Olaf hiort (Germany) and Alberto Pereira (The Netherlands), was supported by ESPE and the European Society of Endocrinology (ESE). The ERN-ENDO will be made up of more than 70 nationally recognised healthcare centres across Europe. The ERN-ENDO is one of 23 networks to be approved. With a focus on ensuring that high quality expertise in the treatment of rare diseases is provided as close to the patient as possible, these networks will work to share expertise, improve diagnosis, educate care providers, facilitate research and link with other ERNs, with the ultimate goal of improving patient care. Alberto Pereira commented, ‘The creation of these ERNs fulfils a long-felt desire. Patients’ associations kept on lobbying for it. Care in the case of rare diseases must become more accessible and information more transparent. In 2011, the EU passed a law stating that every patient suffering from a rare disease is entitled to the best treatment, even if the expertise is in a different country.’ The ERN-ENDO serves as an opportunity to advance the treatment of people with rare endocrine conditions while significantly improving the patient experience. With a strong base of collaboration and partnership, the network will span paediatric and adult care, ensuring all patients are able to benefit. The lessons learnt will strengthen the endocrine community in Europe and beyond. Both ESPE and ESE remain committed to supporting the ERN-ENDO in the future and look forward to the success it brings to the field of endocrinology.
ThERE’S A LOT TO LOOK FORWARD TO in 2017, here at the ESPE office. The redevelopment of the ESPE website is now underway, following the scoping phase which took place towards the end of last year. Thanks to those of you who attended the session at ESPE 2016. This really exciting project will provide you with a much more user-friendly website. Watch out for updates! This year’s ESPE Meeting is combined with the International Meeting of Pediatric Endocrinology in Washington, DC, USA, on 14–17 September. The International Meetings, which take place every 4 years, unite the world’s paediatric endocrinology societies, including this year’s host society, the Pediatric Endocrine Society (PES). An international programme organising committee has developed a fantastic scientific programme and it will be a great opportunity to get together with colleagues from around the world. Make sure you submit your abstracts by the deadline: 7 March. Registration will open in mid-March. ESPE’s Summer School this year will join forces with the PES Global Fellows Program, in keeping with the tradition of holding the Summer School adjacent to the annual meeting. This event will take place on 10–13 September 2017, and you can read more about it on page 2. The deadline for applications is 1 March, so make sure your colleagues know to apply Don’t forget the forthcoming vacancies on the ESPE Council, details of which were sent to members in December. This year, the positions of Chair of the Strategic and Finance Committee, Chair of the Science Committee and Chair of the Communication Committee are up for grabs. These are all key positions on Council and it’s a great opportunity for you as members to get involved in shaping the future of the Society. You can find details in the members’ area of the website at www.eurospe.org. There are also always opportunities to get involved in our ESPE Committees, which rely on the enthusiasm and engagement of ESPE members, so look out for any that are of particular interest to you. You can find current vacancies at www.eurospe.org/ about/vacancies.
Bringing you recent highlights from the world of research
ThE WELL-ATTENDED ESPE Obesity Working Group session consisted of two talks focusing on clinical aspects of obesity and two talks introducing new ideas in the neuroendocrine control of appetite and metabolism. The first talk, by Jovanna Dahlgren (Gothenburg, Sweden), was entitled ‘Bariatric surgery in obese adolescents’. Dr Dahlgren described the Swedish experience of criteria for performing bariatric surgery in young patients, and the short and long term outcomes. She also gave an update on trends in obesity in Sweden over the past decades, indicating that paediatric obesity in this country has ceased to increase, and that there has been a relative decline in the percentage of obese children in Sweden. This, of course, prompted discussion of the reasons for this decline, as well as discussion of trends in other countries. In his talk, ‘Clinical approach to severe early onset childhood obesity’, Gabriel Á Martos-Moreno (Madrid, Spain) used the Madrid Cohort of severe early onset obese children to demonstrate a workflow protocol for studying obese children. he showed different ways to first diagnose obesity associated with syndromes and known monogenic forms of obesity. The next step included searching for new genetic/genomic causes of obesity, which was quite successful in this clearly defined and selected cohort of obese children. Dr MartosMoreno then presented some new genes found to segregate with the obese phenotype. The two talks on more basic research were very relevant to understanding obesity. Vincent Prevot (Lille, France) spoke on ‘Tanycyte transport of leptin into the hypothalamus: implications in leptin resistance’, with an excellent introduction to tanycytes and their role in neuroendocrine control. These specialised glial cells line the third ventricle, and so have close proximity to the hypothalamus. his group has advanced our knowledge of how they transport leptin into the brain in a highly regulated fashion. he went on to show how this mechanism can be affected in situations of obesity and most probably contribute to central leptin resistance. In the final talk, ‘Palatability can drive feeding independent of AgRP (agouti-related peptide) neurones’, Serge Luquet (Paris, France) focused on feeding behaviour and the stimulation to eat highly palatable foods. Our understanding of the neuroendocrine circuits controlling appetite include the concept that AgRP neurones stimulate appetite and food intake. Dr Luquet’s research using genetically manipulated rodent models has shown that animals lacking AgRP neurones continue to be highly motivated to eat palatable foods. his studies support the idea that, in modern society, we overeat due to the overabundance and easy access to high fat, high sugar foods. The session was followed by a business meeting of the Working Group, including discussion of the topic of a European study on ‘Insulin resistance in obese children’.
ThE SESSION FOR ThE ESPE Working Group for Paediatric Endocrine Nurse Specialists and Allied health Professionals in Paris included presentations by international colleagues from The Netherlands, UK, Canada and USA. The themes included partnering with patient groups, professional development and sharing approaches to paediatric endocrine practice. A patient expert from The Netherlands presented the work of AdrenalNET (www.adrenals.eu/about/what-is-adrenalnet-mission), highlighting the European emergency card, seat belt card holder and crisis kit, as well as forthcoming plans for an Addisonian crisis ambulance protocol. North American colleagues gave an interactive presentation promoting nursing research and a ‘how to’ session for nurses interested in sharing their practice/research in the form of a poster. Nursing colleagues from the UK shared their clinical experiences with pubertal suppression in a large series of patients with precocious puberty as well as transgender patients. Looking ahead, there are number of challenges and opportunities. Notably, paediatric endocrine nursing is at various stages of development internationally. One important goal is to expand our membership to share paediatric endocrine nursing best practice worldwide. In additional, we would like more nurses to present their work (clinical and research) at future international meetings, to underscore nursing’s contribution to interprofessional care. Our session at the 10th International Meeting of Pediatric Endocrinology in Washington, DC, USA, will focus on finding a consensus for an international position statement directly related to paediatric endocrine nursing. Any nurse who is interested in learning more or who would like to be added to our mailing list is strongly encouraged to get in touch. We look forward to seeing you in Washington, DC
IN ThE FIRST SESSION, chaired by Malgorzata Wasniewska (Messina, Italy) and Aneta Gawlik (Katowice, Poland), Sophie Christin-Maitre (Paris, France) reported on important and interesting French data concerning spontaneous fertility and pregnancy outcomes in Turner syndrome (TS). Then Jarod Wong (Glasgow, UK) updated us on new supporting data on body proportions in TS and growth hormone therapy, in comparison with earlier studies. Laura Mazzanti (Bologna, Italy) and Malcolm Donaldson (Glasgow, UK) chaired the second session. here, helen Mijnarends (psychologist and official ‘peer-coach’ from The Netherlands) reported on successful work in patient coaching and education in TS. Vardit Gepstein (haifa, Israel) then shared a study of great clinical importance on face perception in TS. This looked at the problems this group has identified among girls and women with TS in correctly understanding facial expressions. Study on oestrogen administration to girls with TS For some years, discussion of the route of oestrogen administration to girls with TS has been ongoing – taking into consideration aspects of feminisation, growth and metabolism. In 2015, Theo Sas (Rotterdam, The Netherlands) updated us on the progress and difficulties associated with transdermal oestradiol supplementation in Europe. We have the choice between conventional oral oestrogen (now usually oestradiol rather than the synthetic ethinyl-oestradiol) and parenteral oestradiol, mostly transdermal. The pros and cons of the different routes are under debate. Patches for transdermal use require (home-)cutting , as the available doses are made for adult women and so give too high a dose for initiation of puberty in the young and low weight girl. The present treatment is performed ‘off label’. We urgently wish to study effects on the patch/oestradiol dose when the patch has been cut into small pieces and stored at different temperatures, but have not yet secured funding. The scientific and clinical questions are still there. Alternative approaches for the desired collaborative European study were discussed this year and further steps are ongoing
AT ThE WORKING GROUP SESSION IN PARIS, Thomas Danne (hannover, Germany) elaborated on the SWEET Project. This non-profit activity aims to provide improved, more uniform care for people with diabetes by comparing processes and outcomes among participating members. Currently, 48 SWEET centres from 33 countries across 5 continents have contributed data for 28 667 patients. The results of data analysis are conveyed to members through biannual benchmarking reports. hopefully, SWEET will help to optimise outcomes for children with diabetes worldwide. Implementing novel technologies such as insulin pumps and sensors was expected to dramatically change treatment methods and improve patients’ quality of life. Shlomit Shalitin (Petah Tikva, Israel) reviewed studies including paediatric patients with type 1 diabetes using pumps and sensors. Indeed, the number of children treated with pumps has increased in most diabetic centres, leading to better glycaemic control, better health related quality of life and decreased hypoglycaemic risk, and the rate of pump discontinuation has been relatively low. however, this has not been the case for continuous glucose monitoring, which was found to improve glycaemic control, yet its rate of adoption has been quite low. Professor Shalitin concluded that it is crucial to formulate effective approaches to implement the available technological advances, and ensure that their use is sustained, by intensifying education and behavioural therapy. Katharine Barnard (Southampton, UK) continued discussion of these issues by emphasising that, although technologies can support self management for people living with diabetes, there may be an additional burden associated with wearing and using these technologies. She examined the role of healthcare professionals in supporting the appropriate use of technology. Another step forward in treating diabetes is development of closed loop systems, which combine a pump with continuous glucose monitoring and, ‘helped’ by an algorithm, automatically control blood glucose levels. Two different closed-loop approaches are being investigated: single hormone (insulin only) and dual hormone (both glucagon and insulin). Tadej Battelino (Ljubljana, Slovenia) and Revital Nimri (Petah Tikva, Israel) discussed these approaches. Dr Nimri reported on several studies comparing these systems, showing an advantage of the dual hormone over the single hormone version. Professor Battelino argued that the main goal of the dual hormone closed-loop systems, namely complete prevention of hypoglycaemia, has still not been achieved due to several physiological and technical barriers. he concluded that the increasing published data on single hormone closed-loop systems demonstrate the safety and efficacy of this approach. Despite all the advances in technology, most patients worldwide still do not achieve the desired glycaemic control, due to the risk of hypoglycaemia, limitations of glucose monitoring, scarceness of diabetes experts and the limited time they have to give a good level of personalised treatment to patients. In my conclusion, I suggested that technology associated with data management and software tools may help patients and their care givers. Software prescribed to a specific patient should be personalised, targeted and suited to individual needs. The information is there – in the pumps, sensors, glucose meters, fitness apps and other devices – and can be collected seamlessly through applications or different platforms at the clinic, and transformed into meaningful treatment recommendations via a software prescription, changing the way diabetes is managed.
ThE PAEDIATRIC AND ADOLESCENT GYNAECOLOGY (PAG) Working Group’s symposium was organised into two sessions. The first, devoted to the gynaecological consequences of functional hypothalamic amenorrhoea linked to anorexia and/or strenuous physical exercise, was chaired by Feyza Darendeliler (Istanbul, Turkey) and Anders Juul (Copenhagen, Denmark). Flora Bacopoulou (Athens, Greece), discussed the relationships between stress and amenorrhoea, with special emphasis on the consequences of sustained increased cortisol levels on the hypothalamicpituitary-gonadal (hPG) axis. Madhusmita Misra (Boston, MA, USA) reviewed the prevalence and consequences of hPG suppression and amenorrhoea in patients with anorexia nervosa, including low bone density and impaired cognitive and emotional outcomes. Neoklis Georgopoulos (Patras, Greece) discussed exercise-related reproductive dysfunction in elite athletes, the main factors being associated with menstrual disturbances and abnormal body composition, stress, energy balance, training methods and reproductive maturity. The second session was chaired by Anne-Sophie Parent (Liège, Belgium) and Michel Polak (Paris, France). It examined the new challenges in the diagnosis and treatment of breast disorders in adolescence, including breast cancer and benign breast conditions. Christine Rousset-Jablonski (Lyon, France) debated breast cancer risk in adolescent girls, emphasising its low prevalence, high risk of recurrence and poorer outcomes when compared with older women. Philippe Touraine (Paris, France) discussed benign breast conditions in adolescent girls: a prevalent and yet not well known set of disorders. he stressed recent studies providing support for a genetic basis in multiple breast fibroadenomas, including the identification of a germline heterozygous variant in exon 6 of the human prolactin receptor gene. In 2017, the PAG Working Group’s symposium is likely to focus on genetic and therapeutic aspects of polycystic ovary syndrome and on the genetics and clinical outcome of puberty in rare diseases. You are cordially invited to attend! Please also suggest topics that you would like to see covered in future symposia. Lourdes Ibáñez, Co-ordinator, [email protected]
ESPE is now more than 50 years old. Your Society has been uniting paediatric endocrinologists ever since its formation,
aiding communication and education and improving patient care. In this article, we look back at the Society's formative
ChâTEAU DE LA TOUR NEAR PARIS, France, was the venue for the third ESPE Diabetes, Obesity and Metabolism (DOM) School, which took place immediately after the ESPE Annual Meeting. The ESPE DOM School was established in 2014, and it has previously been held in Tel Aviv, Israel, and Begunje na Gorenjskem, Slovenia. The School provides up to date teaching in selected areas of diabetes and obesity, promoting discussion and interaction between younger and more senior paediatric endocrinologists, with the aim of developing the next leaders in the field. The 21 /2-day event included interactive lectures by experienced ESPE members, covering all the main topics in diabetes, obesity and metabolism. These lectures were supplemented with small group sessions to discuss teachers’ cases, and case presentations by the students. We welcomed 26 delegates representing 17 countries. The faculty comprised Tadej Battelino (Slovenia), Francesco Chiarelli (Italy), Sophie Guilmin-Crépon (France), Wieland Kiess (Germany), Emmanuelle LeChatelier (France) Roberto Mallone (France), Moshe Phillip (Israel), Michael Polak (France), Shlomit Shalitin (Israel), Nadia Tubiana-Rufi (France) and Martin Wabitsch (Germany). The DOM School Steering Committee and faculty must be thanked for their contributions and interactions with the students. In particular, we are grateful to Jacques Beltrand (France) for his dedication and wonderful organisation of the venue and activities. The next ESPE DOM School will take place on 9–11 November 2017, in Rome, Italy. Details and updates will be available at www.eurospe.org/education/ education_diabetesandobesity.html. Moshe Phillip, Co-ordinator, DOM School Steering Committe Continued success for Hormone Research in Paediatrics DURING 2016, HORMONE RESEARCH IN PAEDIATRICS further improved its reputation as the leading journal in paediatric endocrinology, disseminating information around the world. The submission rate has constantly grown, mainly due to contributions from paediatric endocrinologists in the USA, who recognise the journal as the ideal place to publish their research. This has resulted from the enormous efforts of the Associate Editors and the Editorial Board, who have worked hard to ensure the increasing quality of published papers and to initiate new editorial activities. The involvement of the Pediatric Endocrine Society (PES) has further enriched the Editorial Board with new highly motivated and world-renowned colleagues. Statistics for 2016 reveal that the length of the review process to first decision remains consistent at 4 weeks, while the acceptance rate has decreased from 57% (2013) to 40% (2016). The 2015 impact factor (referring to citations of articles published in 2013 and 2014) has increased slightly to 1.661 from 1,573 (in 2014). The absolute number of citations has increased from 845 (2014) to 1147 (2015), and the 5-year impact factor has risen from 1.595 (2014) to 1.778 (2015). The quality of submissions and published papers is constantly improving, and the Editor-in Chief and the Editorial Board are confident that this will lead to a further increase in the citation rate. Finally, I give my warm thanks to the Associate Editors, the Editorial Board and to the many reviewers for willingly giving their time and much valued expertise. Stefano Cianfarani, Editor-in-Chief, hormone Research in Paediatrics
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