Endo-ERN Newsletter December 2020 ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­ ͏ ‌     ­
 
December 2020
 
 
 
 
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Endo-ERN webinar: Endocrine and bone management in Duchenne muscular dystrophy

On Monday January 25th at 14:30 – 15:30 CET an Endo-ERN webinar about

Endocrine and bone management in Duchenne muscular dystrophy is organised.

In this webinar, Dr. Jarod Wong from the University of Glasgow will review the endocrine and bone morbidity in DMD with focus on the updated international care recommendations and discuss areas for future research which includes management of endocrine and bone in adults with DMD. He will be joined by Justus Kuijer who will share his experience of endocrine and bone morbidity.

 
CPMS webinar: How to invite members to your panel, schedule a video meeting and join a video meeting
 

Endo-ERN CPMS webinar: How to invite members to your panel, schedule a video meeting and join a video meeting

On Thursday January 28th at 17:00 – 17:30 CET an Endo-ERN CPMS webinar about “How to invite members to your panel, schedule a video meeting and join a video meeting” is organised. Danielle Steenvoorden from the Operational Helpdesk will give you an overview of the following steps after opening a patient panel within CPMS: how invite members and schedule and join a video meeting. At the end of this webinar there will be a live Q&A for all your questions.

 
 
 
 
 

Recording Endo-ERN webinars

The recording of MTG7 webinar with multiple speakers within the main thematic group of “Sex Development & Maturation” and the CPMS webinar "How to enrol a patient, start a panel and upload files to a panel" are now available for viewing at your own convenience.

 
 
 
 
 

Special supplemental issue on Rare Endocrine Conditions

rdd-logo 

The European Reference Network on Rare Endocrine Conditions together with the Journal Endocrine will release a special supplemental issue on rare endocrine conditions, which shall be released on Rare Disease Day 28 February 2021.

    

 
 
 
 
 

Job opportunity: Predoctoral researcher in Paediatric Endocrinology

  598-ghent-university

Are you interested in (Paediatric) Endocrinology, ambitious and eager to work on your own scientific research project that will lead to a PhD?

Ghent University and Ghent University Hospital, Department of Paediatric Endocrinology have currently a vacancy for a predoctoral researcher (4 years). Funding is secured for 4 years through a scientific research grant from the Flanders Research Foundation (FWO). To qualify for this position, you must have a degree of MD or be in the last year of your medical training. Preferably you have already some research experience and/or have a profound interest in (Paediatric) Endocrinolgy.

 
 
 
 
EJPRD
 
 
 
 

Research Training Workshops for ERN members

The second round of submission and evaluation of the EJP RD “ERNs Training and support program” has been finalized in December 2020 and was coordinated by Alberto Pereira. As a result, four workshops were recommended for funding, as listed below. The workshops will take place in the upcoming months.

  • The 8th international conference on Ectodermal dysplasias (Smail Hadj-Rabia, INSERM, Dept of Dermatology, Paris, France)
  • Trans-ERN Working Group for Spina Bifida Training: Workshop for future research on innovative diagnostic and interdisciplinary treatment (Giovanni Mosiello, Bambino Gesù Pediatric and Research Hospital, Rome, Italy)
  • ERN multidisciplinary research workshop on diagnostics and treatment of high grade endometrial cancer (Cor de Kroon, LUMC, Dept of Gynaecology, Leiden, the Netherlands)
  • Endocrine cancer – a challenge in adults and children (Barbara Jarzab, M. Sklodowska-Curie National Research Institute of Oncology, Gliwice, Poland)

The information on their launch and more details will be provided on the EJP RD website.

 
 
 
 
 

The Internal Call for Innovation Project in Clinical Trials Methodology in Limited Populations

The Internal Call for Innovation Project in Clinical Trials Methodology in Limited Populations has been launched on December 7, 2020. The call is open to EJP RD beneficiaries and their linked third parties.

The innovation methodologies topics particularly include (but are not limited to): 

  • Development of a disease progression model from a natural history cohort or other observational studies.
  • Development and validation of a disease specific clinically meaningful outcome with special interest in PCOMs, or composite endpoints.
  • Development of a design and analysis procedure for a pharmacometric model and/or bridging study.
  • Development of a randomization-based model as an alternative analysis strategy and explore the level of evidence.

The call aims to encourage collaborations among groups of experts consisting of different stakeholders including methodological experts, clinicians, patients and industry (when relevant) who will jointly develop innovative ready-to-use methods to enhance RD clinical trial methodologies. 

TIMELINE

  • 11 January 2021: A networking meeting will be held to consolidate the collaborative networks.
  • 3 March 2021: Foreseen call closing deadline
 
 
 
 
 

Launch of Exchange Programme for healthcare professionals in European Reference Networks

Exhange Programme 2020-2022 

 

 

Knowledge sharing and stimulating collaboration between health care professionals in European Reference Networks (ERN). That is the aim of the Exchange Programme 2020-2022, funded by the European Commission. In the coming two years, three different rounds of exchanges will take place between professionals of HealthCare Providers that are member of an ERN. The first round of visits will start in March 2021.

The objective of the ERN Exchange Programme is to palliate disparities in specific knowledge or gaps in expertise by facilitating the arrival of high-level expertise in a considerable number of diseases to a big number of Healthcare Providers.

Ecorys Ltd will provide services to all European Reference Networks in the framework of the Exchange Programme of the European Commission.

More information on the Exchange Programme will follow soon.

 
 
 
 
 

Endo-ERN Covid-19-webpage

  endo-covid-19

Endo-ERN has created a page dedicated to Covid-19, especially for patients with rare endocrine conditions who need information, and clinicians treating COVID-19 patients with rare endocrine conditions.

This page is continuously updated with the most relevant information from EU countries and European initiatives. Already 12 countries provided relevant information. Interested? Click here 

 
 
 
 
 

Upcoming events