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EuRREB Newsletter June 2024
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Dear subscribers,
Our 2nd EuRREB Symposium was a great success! Held a few weeks ago 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.
We would like to thank all of our attendees, speakers, e-PAG’s and
stakeholders for making the EuRREB Symposium a memorable and impactful
experience.
Check out the presentations or watch the video of our symposium!
Registries Team
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PRESENTATIONS AVAILABLE: Successful EuRREB
Symposium 2024
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Our 2nd Registries
Symposium in Milan was attended by 90 people (60 in person and
30 online) from 22
different countries and made the event a resounding
success!
We got to listen to different perspectives from clinicians, researchers
and patients. 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.
Please check out our dissemination page with the presentations, video
and photo gallery to revisit our enlightening sessions.
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FUNDING: € 1.4M EU Grant for Rare Endocrine and Rare
Bone Condition Research
EuRREB - European
Registries for Rare Endocrine and Bone Conditions received a grant of
€1.400.000 from the European Commission to continue its work within the
European Reference Networks for rare endocrine conditions (Endo-ERN) and
rare bone conditions (ERN BOND) for the period 2024-2027.
Currently, the registries include more than 35.000 patients (both children
and adults) with rare bone or hormone conditions, and collects detailed
information on 12 rare diseases. The registries are now used in 30 countries,
including non-EU countries, and in more than 100 hospitals. The registries
are led from the Leiden University Medical Center (LUMC) by endocrinologist
Prof. Dr. Natasha Appelman-Dijkstra and pediatric endocrinologist Prof.
Faisal Ahmed (University of Glasgow and LUMC).
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NEW
PUBLICATION: Venous Thromboembolism in Cushing Syndrome
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.
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LATEST MODULE! Pediatric Differentiated Thyroid
Carcinoma
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This module works as
the European pediatric differentiated thyroid carcinoma (ped-DTC)
registry and collects detailed information about each patient regarding
his/her demographic details and clinical information and serves 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 research article published in Endocrine
Connections by clicking on the button below or check out our Condition Specific Modules page for Pediatric
Differentiated Thyroid Carcinoma.
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UPDATES: Annual
reports
Interested in knowing
more about our registries? Explore our 2024 annual reports on the e-REC and the Core
Registry, freshly released. And do not forget to check out the rest of our
Registries for Rare Endocrine and Bone Conditions (EuRREB) website for a more comprehensive
understanding.
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PAIN STUDY:
Osteogenesis Imperfecta
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On
behalf of the Osteogenesis
Imperfecta Study Group 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.
For any inquiries, suggestions, or get actively involved in our study
group, we encourage you to reach out to us at: registries@lumc.nl
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RESOURCE: New Data Dictionaries available online!
The data dictionary for
Gender Incongruence and Rare Obesity are now available.
You can find all of our data dictionaries regarding Condition Specific
Modules or the e-REC and Core Registry on our website.
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CHECK OUT: Major platform dashboard update!
We are excited to
announce our most advanced release so far! The new features include an easy
login page and a homepage dashboard displaying the count of cases per
general condition group for the e-REC platform. Core Registry users can now
see the number of patients completed the PROMs and the CROMs by MTG's
directly on their dashboard.
But wait, there is more! We streamlined data entry, including the ability
to hide questions if a symptom is not present. Plus, our improved layout
and contrast ensure seamless navigation, while updates to specific modules
cater to studies like the Pain in OI study.
Logon to see our new features yourself! No account yet? Press the button
'New User'.
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INTERNSHIP:
Medical Student Advances Research on Pituitary Adenomas at EuRREB
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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 PhD candidate at AMC, she developed a comprehensive manual for
the pituitary
module. This manual, designed to streamline data entry and analysis,
includes critical definitions and key time points.
Interested in a research internship at EuRREB? Please contact us at: registries@lumc.nl
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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? Join 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 support you!
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PREVIOUS:
Events
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At this year's
European Congress of Endocrinology (ECE 2024) in Stockholm, and at the
annual meeting of the European Calcified Tissue Society (ECTS 2024) in
Marseille, EuRREB proudly hosted a booth.Our team was available to answer
questions, provide information on condition-specific modules, and assist
with getting started in rare disease registries. We hope to see you again
next year! This year you can also meet us at ESPE.
For more details about our activities, visit our website
or contact
us directly.
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UPCOMING: Events & Meetings
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