Celebrating Success!

Our EuRREB Symposium 2024 was a great success! Held on Monday April 22 ^nd 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 check out our dissemination page and revisit our enlightening sessions: Video recordings and slides [icon icon ='video fa-fw'] are now available for viewing!

Contributions

A special thanks to all our esteemed speakers who shared their insights, expertise, and valuable perspectives. Their contributions were truly invaluable and contributed immensely to the enriching discussions throughout the day. We got to listen to different perspectives on the registries; from clinicians, researchers and patients. Our two different registries were discussed; e-REC and Core Registry , and some of our condition specific modules. We had a special guest from the French National Rare Disease Registry ( Arnaud Sandrin from BNDMR, France ) and we closed the symposium with a roundtable discussion, where a lot of overarching topics like ethics were discussed. Thank you once again to all of our attendees, speakers, e-PAG’s and stakeholders for making the EuRREB Symposium 2024 a memorable and impactful experience. Let's continue to collaborate, innovate, and drive positive change for our patients! (more…)

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 advancing the registries to a new stage. Go to the login site to check out the new features yourself! No account yet? Register as a new user and get one.

Join Our Registries

We warmly invite all health care providers that provide care to patients with rare endocrine, bone and mineral conditions to register their patients in our registries (EuRREB - European Registries for Rare Endocrine and Bone conditions), because the registries are open for any expert center with an interest to collaborate and the data are available to all researchers who request them.

Patient Participation

We also invite patients with these rare conditions to reach out to us, or their health care providers, as our platform has a patient platform as well. In this platform patients can register their own outcomes, designed in collaboration with our patient representatives and active users. Are you a patient and want to know more about our registries? Please find our Patient Information Sheet and FAQ's on our Patient Information page.

New ...

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 more detailed data within the OI condition-specific module.

In our pursuit to evaluate pain and quality of life, we will utilize a range of Patient-Reported Outcome Measures (PROMs) including the Brief Pain Inventory (BPI), Neuropathic Pain Symptom Inventory (NPSI), EQ-5D, and WHO ICF Mobility. These instruments can be completed by both clinicians and patients. Patients, with their consent, are also encouraged to register on the platform to view and update their information, as well as to complete the relevant PROMs and Patient-Reported Outcomes (PROs). Specific PROs tailored to OI have been meticulously crafted, covering relevant aspects such as current medications and recent healthcare professional interactions.

Should you have any inquiries, suggestions, or wish to become actively involved in our study group, we encourage you to reach out to us via [mail-main] or consider attending our regular Read More

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:

1. Increasing Knowledge: By evaluating the incidence and outcomes of ped-DTC cases, the module seeks to enhance understanding of prevalence, treatment modalities, and patient outcomes across Europe.
2. Facilitating Collaborative Studies: Through the creation of a European ped-DTC cohort, researchers and clinicians gain access to standardized, well-characterized patient data, easing enrollment into linked studies and clinical trials.

The module, seamlessly integrated into the EuRREB Core Registry, collects vital information ranging from anamnestic data to post-treatment outcomes and recurrences. It offers a user-friendly interface and detailed instructions for utilization. For those interested in joining the ped-DTC Study Group or seeking further information, inquiries can be directed to [mail-main] Together, through collaborative efforts, the ped-DTC module aims to drive advancements in diagnosis and treatment for young patients battling thyroid cancer.

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 to transgender and gender diverse youth. Want to start using the module? Get access to the Core Registry and read the instructions on how to use the module. After entering the patient in the core registry, the Gender Incongruence module appears automatically and is ready to use. If you have questions or interest in joining the working group, please contact us on registries@lumc.nl. The full data dictionary can be downloaded here, when available.

The module collects information on

• Transition type and details;
• Mental health comorbidities;
• Gonadal hormonal suppression;
• Gender-affirming therapy;
• Fertility preservation;
• Surgical treatment.

 

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: If you visited our website before, please make sure you clear your cache to have access to the new tools.  

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 [mail-main]. 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.

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 ZOOM link. *It is especially important for Endo-ERN members and the requirement to report your patient numbers for Continuous Monitoring (CM) into our e-REC registry.  

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 our Melorheostosis Study Group.

On Monday April 3^rd 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. (more…)

Congratulations to [link-to-id id=99 org='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 are minimizing the burden on clinicians or patients whilst sharing data and data linkage across borders. (more…)

This has been in the works for weeks and the launch date is finally here! We are so excited to announce our new website: [icon icon ='globe'] eurreb.eu There could not be a more perfect time to launch it than on 3 April 2023 during our first [link-to-id id =217 org ='Event: EuRRECa / EuRR-Bone joint symposium']. With new features tailored to our patients, clinicians and researchers, teasers of upcoming events, news and so much more! Whilst it may not be perfect, we’re still working on it. The site will be under construction over the next few weeks. If you have any questions, please be sure to reach out to our team at at [mail-main] and make sure you share our website on socials!

We would like to thank everyone online and in person for their contribution to a successful final meeting on Monday 13 February! We had fruitful discussions and it was nice looking back at all the work we have done of the past three years. (more…)