Working Groups

Tadej Avcin
University Medical Centre Ljubljana
Education
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Working Group: Education

Co chairs: Carine Wouters, Alessandro Plebani

Objectives
  • Improve educational standards across Europe and foster dissemination of knowledge
  • Provide strategic educational objectives and priorities
  • Support and overlook development of educational activities of existing parent societies
  • Provide platform for networking and coordinate communication between ETC of parent societies
  • Harmonise and monitor educational and training activities of parent societies within Europe
  • Advocate and provide support for communication with specialist societies on a European level (e.g. EAP, UEMS)
  • Develop European platform for subspecialty education (RITA Academy)
Andy Gennery
Newcastle upon Tyne Hospitals
Clinical Guidelines / Recommendations
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Working Group: Clinical Guidelines / Recommendations

Co chairs: Stephen Jollis, Thierry Martin, Angelo Ravelli

Objectives

To identify priority areas for guidelines within each specialty and ensure access to these guidelines for all

Nicolino Ruperto
Istituto Giannina Gaslini, Genova
Registries /Biobanks
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Working Group: Registries /Biobanks

Co chairs: Joris Monfrans, Miles Stanford

Objectives

To provide a census of already running registries in Europe, potentially from local initiatives to international realities. To give us a precise picture of the number of registries, number of patients, conditions examined, type of information collected, to encourage rationalization and efficiency of already existing and future registries.

Marielle van Gijn
University Medical Center Utrecht
Molecular Testing
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Working Group: Molecular Testing

Co chairs: Isabelle Touitou, Kaan Botzug

Objectives

To obtain a standardized and uniform European-wide approach for the molecular diagnosis of monogenic immune–mediated disease ensuring accessibility for state of the art genetic diagnostics for all patients; evaluated by audit against quality standards.

The functional assay list (click here to view), developed by the ERN RITA Molecular Testing Working Group, provides you with a list of laboratories and highly specialized functional testing for primary immunodeficiency, autoimmunity and autoinflamation. These laboratories welcome samples from throughout Europe and may be able to undertake additional testing if required. The following tests should be available in most countries: T,B naïve, memory immunophenotyping including Tregs, neutrophil panel, MHC1 and DR; proliferation assays including PHA, CD3 stimulation and antigen recall; vaccine responses; immunoglobulin and complement measurement and functional complement assays; NBT/DHRs.

If these are not available in your country, please contact any of the laboratories listed as they should be able to also perform these assays or can direct you to a laboratory that can.

For feedback, questions or if you wish to add or amend information in this table please email contact-rita@ern-net.eu
Review date: October 2019

Pavla Doležalová
General University Hospital, Prague
IT/e-Health
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Working Group: IT/e-Health

Co chairs: Nico Wulffraat, Mark Little, Farida Fortune

Objectives

To effectively implement the shared IT platform and Clinical Patient Management System

Michael Albert
Dr. von Hauner Children’s Hospital, Munich
Stem Cell and Gene Therapy
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Working Group: Stem Cell and Gene Therapy

Co chairs: Alessandro Aiuti, Bobby Gaspar

Objectives

To make equal access to Stem Cell and Gene Therapy a reality across Europe for patients affected by rare disorders of the immune system including auto-immune and auto-inflammatory conditions. This goal shall be reached by bringing together ongoing activities and studies in this field, by harmonizing data collection and analysis and finally enabling prospective studies to improve the treatment options for these patients across Europe.

List of current HSCT & GT Studies

Siobhan Burns
University College London
Transition Care
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Working Group: Transition Care

Co chairs: Pere Soler-Palacín

Objectives
  • to scope the prevalence and practice of current transition programs in Europe
  • to identify gaps in transition & the reasons for these
  • to collect information about models that work
  • to develop best practice guidelines
Peter Verhoeven
ePAG
Patient Organisations
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Working Group: Patient Organisations

Co chairs: Leire Solis

Objectives

Contribute to the development of patient information, treatment policies, good practice guidelines and care pathways

Support the network with the dissemination of information and communication to the wider patient community

Contribute to the development of research priorities and ensure they are informed by the needs of patients and families

Advise on ethical issues on the application of personal data rules, compliance of information consent and management of complaints

Engage with the appropriate patient communities for disease specific activities and projects

Anything else needed to achieve RIPAGs goals and objectives.

Martine Pergent
IPOPI
Communication
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Working Group: Communication

Co chairs: Richard West

Objectives

To promote RITA activities and achievements among all stakeholders who has an interest in auto imme diseases, auto inflammatory diseases, primary immunodeficiency diseases.

Joost Swart
University Medical Center, Utrecht
Pharmacovigilance / Biological Therapies
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Working Group: Pharmacovigilance / Biological Therapies

Co chairs: Stephan Ehl

Objectives
  • Establish a common task force for the screening, preventive vaccinations, correct use and monitoring of biologic treatments in immune mediated diseases
  • Complete survey of current registers within the constituent themes
  • Establish a common tool for pharmacovigilance in these rare conditions
  • Complete gap analysis & agree on a common action plan for prospective surveillance on biologicals, biosimilars and targeted therapies such as small molecule-drugs
Paul Brogan
Royal Free Hospital London NHS
Directorate: Research
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Working Group: Directorate: Research

Co chairs: Fabrizio de Benedetti, Martin van Hagen

Objectives

RITA will provide a common platform to facilitate clinical trials using expanded patient registries, thus benefitting more patients with rare immune disorders. By bringing PID, autoinflammatory and autoimmune networks even closer together, RITA will display synergistic effects for future research activities.

RITA will offer a unique opportunity to greatly accelerate patient orientated research in areas such as

(i) Next-generation sequencing technologies

(ii) novel cell- and gene-based therapies

(iii) development of cytokine and antibody therapies

(iv) cutting edge technologies for assessing immunophenotyping RITA will also provide links and bridges between scientific organisations dedicated to investigate rare immune disorders.

Become a Member

The 3 subtypes (different criteria) Associated national centers, Collaborative national centers and Coordination hubs. Blocking period of 6 months between establishment of ERNs and first enrolment of affiliated partners. Integration of identified affiliated partners planned for end of 2017/beginning of 2018

Become a member
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Contact us

We welcome you to contact us for more information. If you have any further questions or queries please do not hesitate to get in touch.

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