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EuRREB Newsletter January 2025
Dear subscribers,
Happy New Year! As we kick off 2025, we are excited to share updates,
milestones, and plans for the year ahead. EuRREB continues to bring
together the rare endocrine and bone disease community, fostering
collaboration and advancing research.
Stay tuned for the latest insights, upcoming events, and ways to get
involved. Let’s make this year a remarkable one together!
Warm wishes,
the Registries Team
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REGISTER: EuRREB Symposium 2025
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Join
us for our Registries Symposium, where engaging discussions,
ground-breaking insights, and meaningful networking await.This is your
chance to hear from leading experts, build connections, and collaborate
with peers. Don’t miss the opportunity to be part of this vibrant
exchange of knowledge.
Our Registries Symposium precedes the inaugural lecture of prof. Natasha
Appelman-Dijkstra. Don't miss out -register now and play a key role in
shaping the future of our collective goals!
📅 Date: Friday 12 September
Venue: Academy
building, Leiden, the Netherlands
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COLLABORATION: ERN-EuroBloodNet for Langerhans Cell
Histiocytosis
EuRREB is currently
creating a module for endocrine and bone complications in Langerhans Cell
Histiocytosis in collaboration with the ERN-EuroBloodNet (European
Reference Network on Rare Hematological Diseases).
Langerhans Cell Histiocytosis is a haematological condition with
manifestations in many systems. Therefore, Endo-ERN, ERN BOND and
ERN-EuroBloodNet have joined efforts to collect information on this rare
disease.
You can find information about all of our active
studies on our website.
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UPDATE:
Working Groups vs. Study Groups
In August 2024 we have
implemented a change to
the structure of our Study Groups.
We now have Working
Groups, which is a group of interested and motivated
researchers, clinicians, and patient representatives, that develop our
condition-specific modules.
Once the module is developed, this group will be dismantled and Study Groups get
the opportunity to do research with data collected in the module. There can
be multiple Study Groups for one module, so the developers of the module
can decide to form a Study Group as well, but the possibilities are not
limited to that.
If you are interested in becoming (part of) a Working or Study Group,
please send us an e-mail at registries@lumc.nl.
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MODULE UPDATE: Achondroplasia
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Great changes are
expected for the Achondroplasia module. For children, the focus is on
tracking foramen magnum stenosis, thoracolumbar kyphosis, and spinal
stenosis development.
In adults the main
interest in outcomes is related to spinal stenosis and deformity.
Dr. Chady Omara, a PhD candidate from Leiden University Medical Center's
Neurosurgery Department, is one of the responsible clinicians for this
study and will be entering data and supervising reporters from
participating centers. Recently he has visited Prof. Klaus Mohnike in
Magdeburg (Germany) to finalize the dataset for the new version of the
module. Clinicians and patients are encouraged to participate in this
study to improve the quality of care for this rare condition.
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CONTRIBUTE:
Top Reporter of 2024!
We are proud to
recognize Dr.
Daniela Esposito from the University of Gothenburg as our
e-REC Top Reporter 2024 and medical student Sophie Huisman from the Leiden University Medical Center as
our Core Registry Top Reporter 2024. We congratulate them for their
outstanding contributions in data reporting!
The e-REC and Core Registry databases play a crucial role in advancing
research, improving patient care, and informing clinical decisions across
Europe. Accurate and reliable data is the foundation of their impact, and
Daniela's dedication exemplifies the high standards and dedication that
drives us forward.
A big thank you to everyone reporting in our databases for their commitment
and hard work! Want to start reporting too? Click the button below to
register as a new user!
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CHECK OUT: Platform changes
We have been working on
improving our Core Registry platform for both – clinicians and patients. We
made it more user friendly!
From the previous
release, patients will receive reminders to fill in PROM's with a direct
link in the email. Also, on the patient’s platform due questionnaires are
now highlighted in red. The frequency is defined by the responsible
clinician. We also added links to all PROM's
(questionnaires) to our website with detailed explanations on their use
and value.
Clinicians will receive
notifications when their patient has completed a PROM with a direct link to
this PROM. This information is also shown on the clinician’s dashboard.
Both platforms – e-REC
and the Core Registry – now have a news item section where we highlight the
latest changes and new modules.
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NETWORK:
Participating Centres
We are excited to
introduce our new Participating Centres page on our website.
This new page provides a comprehensive overview of all the contributing
centres and their participation in our e-REC and Core Registry platforms,
showcasing the collaborative spirit that drives EuRREB forward.
Currently we have 119
centres from 34
different countries entering data into our registries.
Explore our growing network of dedicated centres across Europe, each
playing a crucial role in advancing research and improving patient care.
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RESOURCE:
ORPHA code data viewer!
In our e-REC and Core
Registry data dictionaries, we use different disease classifications to
code the conditions we cover. With the ORPHA code data viewer healthcare
professionals can efficiently search and navigate disease classifications,
providing insights into rare conditions.This user-friendly tool allows
users to search by various codes and terms, making it easier to access
information about rare conditions.
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DROP-IN:
Need help with our registries?
Would you like to
contribute patient data on rare endocrine and bone/mineral conditions to
our registries, but need help to get started? Meet us online
and we will guide you through the process step by step. You can also join
us online to ask any questions related to our registries, which we will be
happy to answer.
Drop-in session are
available twice a month via ZOOM. 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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REGISTER:
Upcoming Webinars
Learn more form our experts! Join one of the upcoming
webinars from Endo-ERN or ERN BOND and gain insights or stay updated.
Use the buttons below for all available Endo-ERN or ERN BOND
webinars.
Endo-ERN webinars are also available on their YouTube channel. Check it
out!
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PREVIOUS: Events
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- On October 15th and 16th,
the ERN BOND have organized their GA in Milan, Italy, where the
EuRREB Registries presented their activities as Work Package 5 lead,
and were present with a booth.
- ESPE 2024 was a big
success! From November 16th till 18th, ESPE 2024 was held in
Liverpool, UK and the Registries had a combined booth with Endo-ERN.
We were able to talk to a lot of people and answer many questions
about the registries.
- The ERICA GA took place
in Udine, Italy on December 11th till 13th. The EuRREB Registries
submitted an abstract about “Electronic Tools for Mapping and
Studying Rare Diseases” and were asked to give an oral presentation.
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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