Research focus

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Rationale of the project

Ataxic cerebral palsy is a very rare early-onset condition. Its inclusion within the broader concept of cerebral palsy  has been questioned in the past. The pathogenic mechanisms are poorly understood, brain imaging only rarely reveals acquired lesions of the brain, and the nosological interpretation is controversial.

The analysis of the largest sample of children with ataxic cerebral palsy to date, published by the SCPE (Surveillance of Cerebral Palsy in Europe) group, also suggest a significant genetic component that remains under-investigated.

Work-packages presentation

artemis-work-packages

Expected outputs

new-guidelines-instruments

New guidelines & instruments

  • Refined definition of ataxic cerebral palsy
  • Neuroimaging classification of brain MRI findings
  • Registration guidelines for epidemiological purposes
  • Algorithm for identifying patients with ataxic cerebral palsy in Real-World databases
educational-material

Educational material

  • New chapter of the SCPE Reference & Training Manuel on ataxic CP
Databases

Databases

  • ARTEMIS database : clinical data, brain images results, genetic work-up results, care, quality of life, parents’ psychological health
  • SCPE common database, with new insights on ataxic CP
Outreach Seminars

Outreach Seminars

  • Scientific papers
  • Seminars / Instructional courses at international conferences
  • Family forums

Project stakeholders

Academic partners

Catherine Arnaud

Catherine Arnaud

Catherine ArnaudEpidemiologist

Catherine ArnaudToulouse, France

Catherine ArnaudWP0

Catherine Arnaud is an Associate Professor of Public Health at the University of Toulouse, France, specialising in Perinatal and Paediatric Epidemiology. Her research focuses on children with disabilities, especially cerebral palsy, examining prevalence, schooling, social inclusion, quality of life, health inequalities, and early preventive strategies. She has chaired the European SCPE network of cerebral palsy registries for over ten years.

Veronka Horber

Veronka Horber

Veronka HorberPediatric Neurologist

Veronka HorberTubingen, Germany

Veronka HorberWP1

Veronka Horber is a Senior Pediatric Neurologist at the University Children’s Hospital Tübingen, Germany. Her research focuses on neuroimaging in children with cerebral palsy, with a particular interest in neonatal imaging and the development of the MRI Classification System (MRICS). As an associated partner and consultant specialist within the SCPE network, she investigates imaging patterns and their relation to associated impairments in cerebral palsy.

Tobias Haack

Tobias Haack

Tobias HaackGeneticist

Tobias HaackTubingen, Germany

Tobias HaackWP2

Tobias Haack is Deputy Director and Senior Consultant at the Institute of Medical Genetics and Applied Genomics at the University of Tübingen, Germany. His research focuses on rare disease genetics, using integrative approaches and advanced technologies to understand human diseases. He has contributed to the identification and in-depth characterization of over 60 novel disease genes, often aiming to develop personalized and targeted therapies. As head of the molecular diagnostics laboratory, he leads the translation of research innovations into clinical practice, promoting the use of multi-omics strategies within interdisciplinary patient care.

Kate Himmelmann

Kate Himmelmann

Kate HimmelmannPediatric Neurologist

Kate HimmelmannGoteborg, Sweden

Kate HimmelmannWP3

Kate Himmelmann is an Adjuct Professor at the University of Gothenburg, Sweden, and a Pediatric Neurologist with extensive experience in cerebral palsy across the lifespan. Her research explores causes, prevalence, survival, associated impairments, and lifelong challenges in individuals with cerebral palsy. She conducts register-based studies using data from the CP Register of western Sweden, the national CP quality register (CPUP), and the European SCPE network. Her work also includes clinical research on the management and treatment of spasticity and dystonia.

Javier de la Cruz

Javier de la Cruz

Javier de la CruzEpidemiologist

Javier de la CruzMadrid, Spain

Javier de la CruzWP4

Javier de la Cruz is a Clinical Research Coordinator at the i+12 Research Institute, Hospital 12 de Octubre in Madrid, Spain, where he has been working from 2017. He was previously a Senior Researcher at the Joint Research Centre of the European Commission in Ispra, Italy. Actively involved in the SCPE network for cerebral palsy surveillance, his research focuses on real-world data study design and analysis methods, including data and process mining. His areas of interest includes traumatic brain injury, healthcare trajectories, predictive modelling, and cerebral palsy, with particular attention to high-value care and technology acceptance.

Élodie Sellier

Élodie Sellier

Élodie SellierEpidemiologist

Élodie SellierGrenoble, France

Élodie SellierWP5

Elodie Sellier is a Doctor in Public Health at Grenoble University Hospital, France, where she is the head of the Department of Medical Information. She is a member of the steering committee of both the “Registre des Handicaps de l’Enfant et Observatoire Périnatal” in Grenoble and the European SCPE network of cerebral palsy registries. Her research focuses on the epidemiology of children with cerebral palsy, including trends in prevalence and the reproducibility of the classifications. She is also involved in evaluating quality of care for hospitalized patients, developing outcome measures and tools for improvement.

artemis-consentium

Patient Advocacy Organisation (PAO)

Alain Chatelin

Alain Chatelin, President

The Fondation Paralysie Cérébrale aims to promote and support research into cerebral palsy, improve the quality of care and support, disseminate best practices, and translates research findings into real-life benefits for those who need it.

loc

Paris, France

The Surveillance of Cerebral Palsy in Europe (SCPE)

SCPE

The Surveillance of Cerebral Palsy in Europe (SCPE) collaboration brings together professionals and researchers working with cerebral palsy registries from across Europe. The aim is to disseminate knowledge about CP through epidemiological data, to raise standards of care for individuals with CP, to inform for service planning, and to provide a framework for collaborative research.

ARTEMIS cohort collaborators

List of participating centres and name of principal investigator:

Guro L. ANDERSEN

Tønsberg, Norway

Kate HIMMELMANN

Göteborg, Sweden

Gija RACKAUSKAITE

Aarhus N, Danemark

Veronka HORBER

Tubingen, Germany

artemis-collaborators

Leuven, Belgium

Els ORTIBUS

Toulouse, France

Caroline KARSENTY

Maroussi Athens, Greece

Antigone PAPAVASILEIOU

Pecs, Hungary

Katalin HOLLODY