• Tadej Avcin
    Tadej Avcin Education
    University Medical Centre Ljubljana
  • Andy Gennery
    Andy Gennery Clinical Guidelines / Recommendations
    Newcastle upon Tyne Hospitals
  • Nicolino Ruperto
    Nicolino Ruperto Registries /Biobanks
    Istituto Giannina Gaslini, Genova
  • Marielle van Gijn
    Marielle van Gijn Molecular Testing
    University Medical Center Utrecht
  • Pavla Doležalová
    Pavla Doležalová IT/e-Health
    General University Hospital, Prague
  • Michael Albert
    Michael Albert Stem Cell and Gene Therapy
    Dr. von Hauner Children’s Hospital, Munich
  • Siobhan Burns
    Siobhan Burns Transition Care
    University College London
  • Peter Verhoeven
    Peter Verhoeven Patient Organisations
    ePAG
  • Martine Pergent
    Martine Pergent Communication
    IPOPI
  • Joost Swart
    Joost Swart Pharmacovigilance / Biological Therapies
    University Medical Center, Utrecht
  • Paul Brogan
    Paul Brogan Directorate: Research
    Royal Free Hospital London NHS
Working Group Chair Co Chairs Objectives
Education Tadej Avcin

(University Medical Centre Ljubljana)

Carine Wouters, Alessandro Plebani (University of Brescia) – 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)

Clinical Guidelines / Recommendations Andy Gennery

(Newcastle upon Tyne Hospitals)

Stephen Jollis

(Cardiff University)

Thierry Martin

(Strasbourg University Hospital)

Angelo Ravelli

(Ospedale Gaslini Genova)

To identify priority areas for guidelines within each specialty and ensure access to these guidelines for all
Registries /Biobanks Nicolino Ruperto

(Istituto Giannina Gaslini, Genova)

Joris Monfrans, Miles Stanford

(Behçet)

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.
Molecular Testing Marielle van Gijn

(University Medical Center Utrecht)

Isabelle Touitou

(Inserm)

Kaan Botzug

(MedUni Vienna/Matern)

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.
IT/e-Health Pavla Doležalová

(General University Hospital, Prague)

Nico Wulffraat

(UMC Utrecht)

Mark Little

(VINE)

Farida Fortune

(Behçet)

To effectively implement the shared IT platform and Clinical Patient Management System
Stem Cell and Gene Therapy Michael Albert

(Dr. von Hauner Children’s Hospital, Munich)

Alessandro Aiuti

(Ospedale San Raffaele Milan)

Bobby Gaspar

(GOSH)

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.
Transition Care Siobhan Burns

(University College London)

Pere Soler-Palacín

(Val d’hebron, Barcelona)

-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

Patient Organisations Peter Verhoeven

(ePAG)

Leire Solis

(IPOPI)

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.

Communication Martine Pergent

(IPOPI)

Richard West

(EURORDIS)

To promote RITA activities and achievements among all stakeholders who has an interest in auto imme diseases, auto inflammatory diseases, primary immunodeficiency diseases.
Pharmacovigilance / Biological Therapies Joost Swart

(University Medical Center, Utrecht)

Stephan Ehl

(Freiburg)

– 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

Directorate: Research Paul Brogan

(Royal Free Hospital London NHS)

Fabrizio de Benedetti

(Bambino Gesu Roma)

Martin van Hagen

(Erasmus Rotterdam)

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.

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