Primary Hyperparathyroidism
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A FOCUS MEETING REPORT FROM: 2nd Expert Workshop on Parathyroid Disorders 27-28 June 2019, Santpoort, The Netherlands PARAT Steering Group: Jens Bollerslev (Norway) Claudio Marcocci (Italy) Lars Rejnmark (Denmark) Camilla Schalin-Jäntti (Finland) Wim Van Hul (Belgium) PARAT Expert Meeting Faculty: Bart L. Clarke (USA) Neil Gittoes (UK) Ghada El-Hajj Fuleihan (Lebanon) Hans Morreau (The Netherlands) Stefan Pilz (Austria) Lars Rolighed (Denmark) Heide Siggelkow (Germany) Antonio Sitges-Serra (Spain) Rajesh Thakker (UK) FREE access to presentation summaries and slide decks at: www.ese-hormones.org/ parat Calcium and Bone Contents Contents What is PARAT? | Steering Group 3 Faculty 2019 4 Participants 2019 5 Special Inherited Forms of Parathyroid Dysfunction 6 Inherited Forms of Primary Hyperparathyroidism (MEN1,2,4, HPT-JT and FIHP): Diagnosis and Management Camilla Schalin-Jantti, Finland CaSR-mutations (FHH – ADH): Genetic and Clinical Perspective, Ghada El-Hajj Fuleihan, Lebanon 7 PTH-receptor Mutation (PseudoHypoPT, Acrodysostosis), Lars Rejnmark, Denmark 8 Breakout Summary 9 Special Aspects of Hypoparathyroidism and Hyperparathyroidism 11 Management of Hypoparathyroidism during Pregnancy, Bart L. Clarke, USA Bone Metabolism and Fractures in Chronic Hypoparathyroidism in Adults, Jens Bollerslev, Norway 12 How to Avoid Surgical Damage to the Parathyroid Glands: 13 Part I: Current Best Practice. Antonio Sitges-Serra, Spain Part II: Prospective Techniques. Lars Rolighed, Denmark Breakout Summary 14 Primary and Secondary HPT and Atypical Adenomas 16 Atypical Parathyroid Adenoma Management Part I: Definitions and Characteristics. Claudio Marcocci, Italy Part II: A Diagnostic View. Hans Morreau, The Netherlands Secondary Hyperparathyroidism: Causes, Consequences and Non-Surgical Management. 18 Stefan Pilz, Austria Primary Hyperparathyroidism – NICE Guidelines. Neil Gittoes, UK 19 Breakout Summary 20 Becoming a PARAT stakeholder 21 Stakeholder engagement / 2020-21 plans PARAT 2020-21: Future Engagement and Recommended Actions 22 Hypoparathyroidism, Hyperparathyroidism and Other Parathyroid Disorders: Recommended Resources: 26 Abstract Consensus Statement / References This report provides readers with: Resources • Consensus Statement Abstract of 1st Expert Workshop, 2018 • Summaries of each faculty presentation • Key learning points emerging from our topical discussions A FOCUS MEETING REPORT FROM: 1st Expert Workshop on • Key recommendations or practical solutions required Parathyroid Disorders 6-7 September 2018, Santpoort, The Netherlands For those seeking a deeper understanding of parathyroid disorders, or for teaching and training purposes, a PARAT Steering Group: Jens Bollerslev (Norway) Claudio Marcocci (Italy) set of further digital materials is available at www.ese-hormones.org/parat, including: Lars Rejnmark (Denmark) Wim Van Hul (Belgium) Camilla Schalin-Jäntti (Finland) Andrea Giustina (Italy) PARAT Expert Meeting Faculty: Antonio Sitges-Serra (Spain) Rajesh Thakker (UK) • 2019 2nd Expert Workshop report with live references to PubMed Heide Siggelkow (Germany) Hans Morreau (The Netherlands) • Presentation summary transcripts • Faculty slide sets (where permitted) Your opinions count. Complete the linked PARAT survey at: • 2018 1st Expert Workshop report www.ese-hormones.org/ parat When referring to any materials obtained from the PARAT webpages, please cite: Calcium and Bone “With permission of 2018-19 ESE PARAT programme or its participants” and list the url. 02 PARAT Report Welcome On behalf of the European Society of Endocrinology and my fellow Steering Group Welcome colleagues, we are delighted to publish this summary report of the 2nd Expert Workshop on Parathyroid Disorders, held earlier this year. What is PARAT? Building on the outcomes of the first Expert Workshop held in September 2018, the forum welcomed back twenty 2018 participants, who were joined by a further forty invited expert endocrinologists, surgeons and PARAT is an ESE Calcium pathologists, from 23 countries. Through expert presentations and group synthesis sessions, delegates and Bone Focus Area shared their opinions, research ideas and management experiences, to identify how to overcome the unmet programme, that is identifying needs of parathyroid patient care. the challenges and unmet research and clinical needs of After 24 hours of intense discussions, we collated the group's list of recommendations, approaches or parathyroid disorders. practical solutions that PARAT stakeholders and others could consider next. Our combined suggestions of how to improve management practices and education of hypoparathyroidism, hyperparathyroidism and It is led by a Steering Group other parathyroid disorders are presented on pages 22-26 of this report. and invited Faculty and participants, who together are Whether an endocrinologist, endocrine surgeon, pathologist, trainee or other health care professional, we proposing new actions and look forward to working with you all to continue our quest to improve the future care of parathyroid disorder solutions to alleviate these patients through the PARAT programme. disorders, through: I would like to thank all Steering Group colleagues, faculty, speakers and participants for achieving another • Expert workshops high quality, thought provoking event and for their continuing work as PARAT expert ambassadors to action • Community events our next steps. Lastly we acknowledge and thank Shire - now part of Takeda Pharmaceutical Company • Digital communications Limited - for their 2-years unrestricted grant, which has enabled the ESE team to deliver the PARAT • Educational reports programme of activities. • Official publications Jens Bollerslev • Defining research gaps Chair, ESE PARAT Educational Programme For more resources and to get involved, visit www.ese-hormones.org/ parat Expert Steering Group JENS BOLLERSLEV CLAUDIO MARCOCCI LARS REJNMARK Steering Group Chair, ESE Clinical Committee Calcium and Bone Focus Area Oslo University Hospital, Norway University of Pisa, Italy (Clinical Lead) Aarhus University, Denmark CAMILLA SCHALIN-JÄNTTI WIM VAN HUL ESE Education Committee Chair Calcium and Bone Focus Area (Basic Helsinki University Hospital, Finland Lead) University of Antwerp, Belgium PARAT Report 03 PARAT 2019 Faculty Faculty Members BART CLARKE GHADA EL-HAJJ FULEIHAN NEIL GITTOES Mayo Clinic, Rochester, Minnesota, American University of Beirut, University of Birmingham, UK USA Lebanon HANS MORREAU STEFAN PILZ LARS ROLIGED Leiden University Medical Center, Medical University of Graz, Austria Aarhus University Hospital, Denmark The Netherlands HEIDE SIGGELKOW ANTONIO SITGES-SERRA RAJESH THAKKER (Non-attending) University Medical Centre, Göttingen, Hospital del Mar and Universitat University of Oxford, UK Germany Autònoma de Barcelona, Spain ESE PARAT Team ALEX HARRISON NIK SCREEN RACHEL ARTHUR Bristol, UK London, UK Independent medical writer, London, UK 04 PARAT Report PARAT 2020 Participants KARIN AMREIN FADIL HANNAN FEDERICA SAPANARO Expert Medical University of Graz, Austria University of Liverpool, UK University of Pisa, Italy NATASHA APPELMAN-DIJKSTRA ANSGAR HECK FUSUN SAYGILI Participants Leiden University Medical Center, Oslo University Hospital, Norway Ege University Medical Faculty, Izmir, The Netherlands Turkey ELIF HINDIE JOHANNA AROLA Bordeaux University Hospital, France ABBEY SCHEPERS Helsinki University Hospital and Leiden University Medical Centre, The University of Helsinki, Finland GHERLAN IULIANA Netherlands University of Medicine and Pharmacy, ZHANNA BELAYA Bucharest, Romania EWA SEWERYNEK National Medical Research Center for Medical University of Łódź, Poland Endocrinology, Moscow, Russia WAFA KAMEL Karolinska Institute, Stockholm, TANJA SIKJAER SIGRIDUR BJÖRNSDOTTIR Sweden Aarhus University Hospital, Denmark Karolinska University, Stockholm, Sweden PETER KAMENICKÝ ELENA TSOURDI Paris-Sud University, France Dresden University of Technology, LUIS CARDOSO Germany Coimbra Hospital, Portugal OLLE KÄMPE Karolinska Institute, Stockholm, KYRIAKOS VAMVAKIDIS SABRINA CORBETTA Sweden Henry Dunant Hospital, Athens, University of Milan, Italy Greece BRUNO LAPAUW BRIGETTE DECALLONNE Ghent University Hospital, Belgium KARIN VAN DER TUIN University Hospital, Leuven, Belgium Leiden University Medical Centre, ÖZER MAKAY The Netherlands ANNA MARIA FORMENTI University Hospital, Izmir, Turkey Spedali Civili of Brescia, Italy NATIA VASHAKMADZE POLYZOIS MAKRAS Regional Hospital and Clinic, MORTEN FROST 251 Hellenic Airforce & VA General Tbilisi, Georgia Odense University Hospital, Denmark Hospital, Athens, Greece PETER VESTERGAARD CARMINA TERESA FUSS SALVATORE MINISOLA (Non-attending) University Hospital Würzburg, Sapienza University of Rome, Italy Aalborg University Hospital, Denmark Germany PAUL NEWEY CAROLA ZILLIKENS LAURA GIANOTTI University of Dundee, UK Erasmus Medical Centre, Rotterdam, University of Turin, Italy BARBARA The Netherlands FRASIER GIBB OBERMAYER-PIETSCH HANS-GEORG ZMIERCZAK Royal Infirmary of Edinburgh, UK Medical University, Graz, Austria Ghent University Hospital, Belgium JOAQUIN GOMEZ-RAMIREZ EEVA RYHÄNEN ARKADIUSZ ZYGMUNT University of Alcala De Henares, Spain (Non-attending) Medical University of Łódź, Poland Helsinki University Hospital, STEFANIE HAHNER Finland ALEXANDRA ZAHN (Non-attending) Schoen Klink, Hamburg, Germany University of Würzberg, Germany The Duin & Kruidberg estate was first established in the 17th century as a summer residence for affluent Venue residents of Amsterdam. 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