Medical Student Advances Research on Pituitary Adenomas at EuRREB

Elise Roeleveld

Leiden, Netherlands – Elise Roeleveld, a medical student at Leiden University Medical Centre (LUMC), has recently completed a notable research internship at the European Registries for Rare Endocrine and Bone Conditions (EuRREB). Her work focused on pituitary adenomas, a rare type of endocrine tumor.

During the initial phase of her internship, Elise meticulously entered patient data into the pituitary module at two prominent Dutch centers: LUMC and Amsterdam University Medical Centre (AMC). In collaboration with Loren van der Hoeven, a [...]

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Successful EuRREB Symposium 2024

Registries Symposium 22 April 2024 (11)
Celebrating Success!

Our EuRREB Symposium 2024 was a great success! Held on Monday April 22nd at the Radisson Blu hotel in Milan, Italy, it was an incredible gathering of passionate individuals dedicated to advancing research and improving the quality of patient care in rare endocrine and bone conditions. Our EuRREB symposium 2024 was attended by 90 people (nearly 60 people in person and over 30 people online) from 22 different countries and made the event a resounding success!

Dissemination

Please [...]

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New EuRREB Publication: Venous Thromboembolism in Cushing Syndrome

Cushing’s syndrome def

We are pleased to announce the release of a comprehensive new EuRREB publication: “Venous Thromboembolism in Cushing Syndrome: Results from an EuRRECa and Endo-ERN Survey”.

This new EuRREB publication: “Venous Thromboembolism in Cushing Syndrome” is pivotal research that sheds light on the prevalence and management of venous thromboembolism (VTE) in patients with Cushing syndrome, a condition characterized by excessive cortisol production.

Key Findings Patient Sample: The study surveyed 222 patients diagnosed with Cushing syndrome across various European centers. Thromboprophylaxis [...]

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Major e-REC platform dashboard update!

New dashboard platform improvement

We are excited to announce our most advanced release of the e-REC platform dashboard so far! Check out our newest features after our recent e-REC platform dashboard update. We now show the counting cases per general condition group of the electronic REporting of new Conditions (e-REC) platform on the homepage of the login site. Special thanks goes to Mariya Cherenko, our Data Manager, Ana Priego Zurita, our Quality Manager, and to our platform developer Mihai Bulaicon for [...]

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Pain Study in Osteogenesis Imperfecta

Pain Study in OI 2

On behalf of the Osteogenesis Imperfecta Study Group within the Core Registry platform we invite you to participate in the upcoming “Pain Study in Osteogenesis Imperfecta (OI).” This initiative seeks to comprehensively evaluate chronic and acute pain experiences and assess the effect of various treatments among patients diagnosed with Osteogenesis Imperfecta.

Your involvement in this study is pivotal to its success. We invite you to contribute to the Core Registry by providing essential patient information, along with [...]

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New Pediatric Differentiated Thyroid Carcinoma Module launched

Ped-DTC module news item

The European Pediatric Differentiated Thyroid Carcinoma (ped-DTC) Study Group proudly announces the launch of its specialized module. This module, initiated in January 2024, aims to advance understanding and treatment outcomes for pediatric patients diagnosed with thyroid cancer.

Pediatric DTC is a rare disease, making it challenging for individual study sites to gather sufficient clinical data for conclusive research. In response, EuRREB is fostering collaboration among multiple institutions across Europe to compile comprehensive datasets.

Key Objectives of the Module include:

 [...]

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New Module! Gender Incongruence

Gender Incongruence

This condition specific module was launched in October 2023 and is the work of the Gender Incongruence Study Group.

The access to transgender healthcare, especially for children and adolescents, varies extremely across Europe, depending on where they live. In some countries, it is even virtually impossible.

This condition-specific module is aiming to collect some basic information in order to map transgender healthcare across Europe, to analyze the trends and hopefully to deliver a better and more homogeneous care [...]

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New Website Features: Accessibility and Translation tool now available!

Accessibility icon website

Our website is now accessible to accommodate all visitors and users, including people with disabilities. Our website visitors who are visually impaired can use our new accessibility tool. Click on the accessibility icon in the top right corner of our website and check out the new features to make reading our website effortless.

Also enjoy reading our website in one of the main global languages available through our new translation tool (top right corner of our website).

Note: [...]

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Check out our Frequently Asked Questions (FAQ) page

FAQ

Find out everything there is to know about our e-REC and Core Registry on our: Frequently Asked Questions (FAQ) page.

If you still have a question after reading the FAQ’s, please contact us at registries@lumc.nl.

In addition to our FAQ page for professionals we also have a page especially for patients. This FAQ Patient page contains answers to some of the questions our/your patients might have.

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Need help getting up and running with our registries?

Drop-in Sessions

Are you interested in putting data of your patients with rare endocrine and bone/mineral conditions into our registries, but need help to get started?

We can show you how to enter the data and answer any questions you might have related to our registries.

Drop-in for one of our online ZOOM sessions, available twice a month. We are here to assist you!

For all sessions, you can log in via the button on our homepage or through the

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