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EuRREB
Newsletter January 2024
Dear subscribers,
As we step into the promising realms of 2024, we extend a warm welcome to
each of you, our valued community members.
EuRRECa and EuRR-Bone have been working closely together over the last
couple of years and now we are excited to announce that we have seamlessly
merged our forces under the unified banner of EuRREB:
European Registries for Rare Endocrine and Bone conditions.
Check out our very first EuRREB newsletter!
EuRREB Registries Team
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COLLABORATION: EuRREB - European
Registries for Rare Endocrine and Bone conditions
EuRRECa
and EuRR-Bone
have been working closely together over the last couple of years and have
now seamlessly merged their forces under the unified banner of EuRREB: European
Registries for Rare Endocrine and Bone conditions.
In 2024 we wish to amplify the impact of our collective efforts in the
pursuit of advancing research and understanding in our shared domains.
EuRREB embarks on a journey of innovation, knowledge-sharing, and
unparalleled collaboration.
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REGISTER:
EuRREB Registries Symposium 2024
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Our 2nd joint
Registries Symposium promises enriching discussions, cutting-edge
insights, and invaluable networking opportunities. You will gain access
to expert perspectives and fostering collaborations. Seize the
opportunity to be part of this dynamic exchange of ideas. Register now
and contribute to the collective growth of our community. Your presence
is not just welcomed; it's integral!
📅
Date: Monday 22 April
Venue: Radisson
Blu Hotel Milan, Italy
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UPDATES: ERN Funding
As of October 2023, new
EU grants have been developed for all European Reference Networks (ERNs)
and EuRREB is confirmed to be part of both Endo-ERN
and ERN
BOND until at least end of 2027. EuRREB will receive funding to
continue the development of both e-REC and the Core Registry and make sure
more data is available for research on rare endocrine and bone conditions.
In the coming years we will take more steps in expanding the research scope
and thereby improving clinical and patient-related outcomes. We are very
happy to be part of these ERNs and get the support needed to continue our
work!
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ACTION:
for all e-REC reporters!
We invite you to
actively participate in the Core Registry to enhance the depth and breadth
of our invaluable datasets. Your crucial role as e-REC reporters ensures
the success of our collaborative efforts in advancing rare endocrine and
bone/mineral conditions research. By contributing to the Core Registry, you
not only empower clinicians and researchers but also play a vital part in
shaping the future of patient care. Your dedication is pivotal in creating
a comprehensive resource and improve the lives of individuals affected by
these rare disorders. Join us in this collective endeavor to make a lasting
impact – your input matters!
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NEW
MODULE! Gender Incongruence
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The access to
transgender healthcare, especially for children and adolescents, varies
extremely across Europe. This condition specific module launched in
October 2023 and is the work of the Gender
Incongruence Study Group. The module is aiming to analyse the trends
in transgender healthcare and hopefully to deliver a better and more
homogeneous care to transgender and gender diverse youth.
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RESOURCE:
Data Dictionaries now online!
You now can find all
the data dictionaries regarding the e-REC, Core Registry and
condition-specific modules online. Check it out using the link below.
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NEW
MODULE! Pediatric Differentiated Thyroid Carcinoma
This module will work
as the European pediatric differentiated thyroid carcinoma (ped-DTC)
registry and will collect detailed information about each patient regarding
his/her demographic details and clinical information and will serve in the
future as the umbrella for linked studies. The main objectives are to
collect prospective data on demographics, tumor characteristics, given
treatment and outcome of pediatric DTC patients, aiming to increase
knowledge on prevalence of pediatric DTC, its treatment across Europe and
its outcome.For more information please read the full article by clicking
on the button below or check out the condition
specific modules page for ped-DTC
(it will be available soon!)
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CHECK
OUT: New (upcoming) platform developments
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We are glad to inform
that new updates of the platform will be available by February 2024.
We have implemented a
new login page for the Core Registry (for patients and clinicians), with an
accessibility tool, and security improvements with invisible reCAPTCHA v2
(Completely Automated Public Turing Test to Tell Computers and Humans
Apart) for brute force attacks protection.
Also the Core Registry users will be able to see on their dashboard how
many patients have completed PROMs and the percentage of filled in CROMs by
MTGs.
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NEW WEBSITE FEATURES: Accessibility and
Translation tool
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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.
Also enjoy reading
our website in one of the main global languages available through our new
translation tool.
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DROP-IN:
Need help with our registries?
Are you interested in
sharing data from your patients with rare endocrine and bone/mineral
conditions with our registries, but need help to get started? Meet
us online and we will guide you through our registries.
Drop-in session are
available twice a month. You can join a ZOOM session and ask anything
related to our registries. Please find an overview of all of our drop-in
sessions using the link below. For more information feel free to contact
us. We are here to assist you!
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UPCOMING:
Meetings & Events
Check out all the
upcoming exciting opportunities to expand your knowledge and community.
If you have an event
upcoming that you would like to have endorsed contact us using the link
below.
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EuRRECa and EuRR-Bone Coordinating Centre
Leiden, LUMC
The Netherlands
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www.eurreb.eu