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EUROPEAN NETWORK ON RARE PRIMARY IMMUNODEFICIENCY, AUTOINFLAMMATORY AND AUTOIMMUNE DISEASES

Newsletter - Fall 2020 Twitter icon LinkedIn icon YouTube icon

ERN-RITA ACTIVITIES

MERITA project "A metadata registry for the ERN RITA" has started! 

The aim of MERITA is to complete the registration of all the RITA registries in the European Rare Diseases Registry Infrastructure and develop a new RITA registry collecting basic data from all the RITA network registries, according to the Common Data Elements (CDE) identified by the European Commission’s Joint Research Centre. This is an important step towards attaining interoperability between rare immune disorder registries, which is essential to ameliorate care of patients. 

>>> Download MERITA leaflet
 
 

ern-rita webinars

RITA released its two first very successful webinars and plans another one for 23rd October. 
  • The first one on Paediatric Inflammatory Multisystem Syndrome (PIMS) in the context of COVID-19 was presented by Professor Angelo Ravelli, Head of Division of Rheumatology at the Giannina Gaslini Institute, Genoa, Italy, and Director of Pediatric Residency Program at the University of Genoa and moderated by Prof Tadej Avcin, LUMC, Ljubljana.
>>> Please see the replay on the RITA YouTube channel
  • The second one, on the Evaluation and Early Diagnosis of ANCA Associated Vasculitis (AAV), was presented by Irmgard Neumann, nephrologist, Vienna, Austria and IZZ, Immunologiezentrum Zurich, Switzerland, active EUVAS member and moderated by Ingeborg Bajema, LUMC, Leiden, Netherlands.
>>> Please see the replay on the RITA YouTube channel
  • The third one, with the topic Newborn screening for SCID – implications from a one-year experience of a nationwide program, is planned for October 23rd, 14:00 CEST and will be presented Dr Fabian Hauck, Assistant Professor and Head of Immunodeficiency Unit and Immunological Diagnostics Laboratory at LMU Klinikum, Munich and moderated by Dr Michael Albert, Professor at the Department of Pediatric Hematology/Oncology and Head of SCT Program at LMU Klinikum, Munich.
>>> Register here
>>> Please see information on future planned webinars on the RITA website
 


RITA endorses Screen 4 Rare call to action on Newborn screening (NBS) for rare diseases

Screen 4 Rare is a multi-stakeholder initiative launched by IPOPI, ISNS and ESID aimed at exchanging knowledge and best practices on NBS for rare diseases. Its ultimate objective is to ensure all babies born in the EU can have equal access to newborn screening which can be a life-saving tool for conditions such as SCID. This call to action has already been endorsed by 30 members of European Parliament.

>>> Read the call to action

 


RITA website update 

RITA released several updates on its website in September. The domain has changed from rita.ern-net.eu to easier and more suitable ern-rita.org. Further, the updates focused on the RITA streams disease structure, presentation of the member centers and a webinar archive.

Further improvements are planned for the following months.

>>> Visit the RITA website

FROM RITA STREAMS - AUTO-INFLAMMATORY

Start of the Clinical Trial ABACHAI at the GAIN Network

GAIN is the German network for the research and treatment-optimization of patients with multi-organ autoimmunity. The research network is funded by the Federal Ministry of Education and Research (BMBF) since May 2019. It includes a clinical trial analyzing the safety and efficacy of Abatacept (s.c.) in patients with CTLA4-haplo-insufficiency or LRBA deficiency (ABACHAI), which started in July 2020. The plan is to treat 20 patients with Abatacept for a period of twelve months, with the patients injecting the drug under the skin themselves on a weekly basis. The investigations will focus on the potential side effects of Abatacept in patients suffering from this immunodeficiency, in particular an increased susceptibility to infections and the reactivation of Epstein-Barr viruses (whistling glandular fever) and cytomegaloviruses. Data on efficacy are also being collected. Since a possible improvement of clinical symptoms varies depending on the organ system affected, a scoring system was developed in which the symptoms can be evaluated comparatively: the CHAI-Morbidity Score. In addition to examining clinical and laboratory data, the study also examines how treatment with Abatacept affects the quality of life of patients. This will enable ABACHAI to make patient-relevant statements on a potential new treatment option for these rare diseases.
 


September: World Autoinflammatory Awareness Month 

From the consortium of worldwide autoinflammatory patient organisations. With this initiative, they invite patients, cares, families, and patient organisations to come together and raise the profile of these rare and complex conditions. Working together allows to SHARE knowledge with others and EMPOWER patients.

>>> More here

FROM RITA STREAMS - PRIMARY IMMUNODEFICIENCIES

COPID-19: A global survey to gather specific data on PID patients in COVID-19 context

All the stakeholders agree on the fact that the PID community is in need of global data on the way SARS-CoV-2 affects patients with PID. Physicians, please refer your cases, Patients, please inform your physician.

>>> Join COPID19, the Worldwide Survey of COVID-19 in PID patients
 


IPOPI calls on authorities to ensure appropriate supply of immunoglobulins

IPOPI published an Open Letter calling international, regional and national authorities to ensuring sufficient blood and plasma supply during and after the COVID-19 outbreak. IPOPI is urging all to develop strategies that mitigate the currently observed drop in blood and plasma donations to ensure that patients in need of plasma-derived medicinal products, such as patients living with a primary immunodeficiency, can continue to access them in the medium/long term.

>>> Read the open letter
 


IPOPI released very successful webinars, at disposal online on IPOPI TV

  • PID and Cancer – Exploring the crossover, speaker Prof. Isabelle Meyts (University Hospital of Leuven, Belgium), Dr Nizar Mahlaoui, (Necker Hospital Paris, chair of IPOPI medical advisory Panel -MAP-) in attendance.
  • Hyperinflammation in PID & How it differs from COVID-19? Speaker: Prof Frédéric Rieux-Laucat (Imagine Institute, Paris, France), Dr Nizar Mahlaoui, (Necker Hospital Paris, chair of IPOPI MAP) in attendance.
  • Shortening the PID diagnostic delay with calculated globulins, Speaker Prof Stephan Jolles, (University Hospital of Wales, United Kingdom), in attendance Dr Virgil Dam, (Erasmus University Rotterdam, The Netherlands, IPOPI MAP member)
  • PID and vaccines – Prof. Cunningham-Rundles, Mount Sinaï School of medicine, New-York, USA), Dr Nizar Mahlaoui, (Necker Hospital Paris, chair of IPOPI MAP) in attendance.
>>> Have a look at IPOPI TV

ABOUT ERNs

Second call for ERN Research Mobility Fellowship opens on 1st October

PhD students and medical doctors in training from ERN member and Affiliated Partner institutions can apply for funding of short-term (1 to 3 months) training visits at another ERN center outside their country of residence.

>>> More here

ANNOUNCEMENT

IRDIC Orphan Drug Development Guidebook

The commentary ‘Boosting delivery of rare disease therapies: the IRIDIC Orphan Drug Development Guidebook’ has been published in Nature Reviews – Drug Discovery. This guidebook is aimed at facilitating drug development for rare diseases by organizing available tools into a standardized framework.

AGENDA

october 2020

14-17th October: 19th Biennial Meeting of The European Society for Immunodeficiencies (online) with INGID and IPOPI

>>> ESID, INGID, register here
>>> IPOPI global Patient meeting, register here

 

23rd October, 14:00 CEST - ERN-RITA Webinar: Newborn screening for SCID – implications from a one-year experience of a nationwide program
 
>>> Register here
>>> For information on future and past RITA webinars visit the RITA website
 
 

november 2020

28th November-1st December: Autoimmunity: 12th International Congress will take place in Athens, Greece
In light of the ongoing COVID-19 pandemic, the Autoimmunity 2020 Congress in Athens will be postponed to 2021. The Autoimmunity Congress will now take place from 28th May - 1st June, 2021.

>>> Register here

 
Find out more on https://ern-rita.org
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ERN RITA · UMC Utrecht · Heidelberglaan 100 · Utrecht, 3584 CX · Netherlands

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