Successful EuRREB Registries Symposium 2024

Registries Symposium 22 April 2024 (11)

Celebrating Success!

Our 2nd EuRREB Registries Symposium was a great success! Held on Monday April 22nd in Milan 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 symposium was attended by 90 people (nearly 60 people in person and over 30 people online) from 19 different countries and made the event a resounding success!

Please check out our dissemination page and revisit our [...]

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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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Would you like to join one of our Study Groups?

Research

Study Groups are composed of experts from different disciplines including patient representatives. Each group brings together their expertise to accomplish its objectives. These might include developing research projects within the registries such as developing condition specific modules.

At the moment we are in need of a pediatric surgeon in our Achondroplasia Study Group, a member (preferably a geneticist) in our Osteogenesis Imperfecta Study Group and a ERN-BOND member in [...]

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Successful first joint EuRRECa / EuRR-Bone symposium!

2023JS-Attendees-group

On Monday April 3rd 2023, the first joint EuRRECa/EuRR-Bone symposium took place in Leiden, the Netherlands. With participants representing 11 countries we celebrated five years of the registries, took a look at our future plans, and exchanged knowledge.

We got to listen to different perspectives on the registries; from the ERNs, clinicians, researchers and patients. Registries activities have been discussed, such as our Condition Specific Modules, and we closed off the symposium with a nice lunch and poster exhibition.

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Congratulations Faisal!

Faisal-Ahmed

Congratulations to EuRRECa project leader Professor Faisal Ahmed from University of Glasgow for his appointment at the University of Leiden as Professor of Endocrine Registries. His inspiring Inaugural Lecture was held Monday 3 April.

The topic Strength in Numbers explained the importance of having high quality, patient-centred registries for rare diseases.
In addition to supporting several forms of clinical research, disease registries can deliver on improvements in the quality of clinical care.

Future challenges [...]

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