University Toulouse 2 Jean Jaurès UT2J

University Toulouse 2 Jean Jaurès UT2J (UTM), France

University of Toulouse II (known by the name of Université de Toulouse-Jean Jaurès since 2014 and formerly Université de Toulouse-Le Mirail, or UTM) is one of 3 universities in Toulouse, France. The humanities university of Toulouse, is organised into many pedagogical components: UFRs (unités de formation et de recherche) and university institutes. The department involved in this project is the research lab CERPP and particularly the research Team “developmental psychopathology” (Head Pr Bernadette Rogé). This team is specialized in developmental disorders and more specifically autism. Bernadette Rogé and her team is involved in many collaborations at regional, national and international level.

RHE31 Child Disability Register in Haute-Garonne, France

The RHE31 is a population-based register which provides continuous monitoring of child deficiencies and handicaps in the Haute-Garonne region (South-West France). All children born in 1986 or after, and having at least one of the following impairments at the age of 8 years: motor impairments (including cerebral palsy), severe sensory impairments, severe intellectual disabilities, Down syndroms, or pervasive developmental disorders covering a spectrum of various levels of functioning are concerned by the registration.

The objectives are to monitor prevalence rates of severe childhood disabilities over time, to describe the functioning in multiple areas of life and to document the consequences for the family, to better understand risk factors especially perinatal ones, and to assist the Health authorities in the planning of medical and social offer suitable for such children (availability of specialized care facilities, home care and outpatient care).

The RHE31 obtained recurrent scientific qualifications by the French Committee of Evaluation of population-based registers since 1999 (establishment’s year). Its usual activities are authorized by the French data protection agency (CNIL, authorization number: 900263).

Team:

Medical staff: Catherine ARNAUD (Director), Malika AYOUB-DELOBEL, Dana KLAPOUSZCZAK; Statistician: Virginie ELHLINGER, Research associate: Aouicha ABID

Registry on severe childhood disabilities and the perinatal observatory in Grenoble, France – RHEOP

The registry on severe neurodevelopmental childhood disabilities and the perinatal observatory based in Grenoble, collects data on morbidity and mortinatality in three alpine districts in the southeast of France: the district of Isere from generation 1980 onwards and the two Savoy districts from generation 1997 onwards. The birth rate in this area is around 30,000 children per year.

Medical surveyors routinely visit various sources and record all cases living in their 8th year of life in one of the above mentioned districts with a confirmed diagnosis of autism spectrum disorders as well as children with cerebral palsy, intellectual disability (IQ<50), Down syndrome, hearing loss (> 70 dB loss in both ears), visual disability (acuity of less than 3/10 of the best eye after correction) and motor disabilities requiring devices or permanent physiotherapy. Concerning mortinatality, the surveyors collect data on stillbirths (≥ 22 weeks of gestation or birth weight ≥ 500g) and terminations of pregnancy.

The principal aims of the registry are:
– To monitor trends in the prevalence of severe neurodevelopmental disablities and mortinatality events.
– To do studies on risk factors for these events and to evaluate the quality of life of children with disabilities
– To help local health authorities in planning needs for inclusion of children with severe disabilities into mainstream school and for planning institutional facilities

The RHEOP is an officially qualified registry since 1996 and the data collection has been approved by the national ethics committee (CNIL authorisation N°: 997086)

Team
Anne EGO (director of the perinatal observatory), Agnès MONTOVERT (surveyor), Christine GOMEZ (surveyor), Delphine LAURENT (surveyor), Catherine TRONC (Statistician), Claire AMBRICO (accountant secretary), Marie DAVID (research associate).

LEADER

Bernadette Rogé
Bernadette RogéUniversity Professor, Psychologist. Full Professor (Exceptional Class, 2nd rank), University of Toulouse 2 (Le Mirail), Octogone Pluridisciplinary Research Unit (Unité de recherche Interdisciplinaire Octogone EA 4156), CERPP team at the Centre d’études et de recherches en psychopathologie (Research and Study Center of Psychopathologies).
Years of experience: 39
Specific expertise: Autism, screening, early intervention

Bernadette Rogé

  • Psychology curriculum (1970-1974) at the universities of Nice, Paris 5 and Aix en Provence.
  • ost graduate certificate (DEA) in psychology (1979), University of Toulouse.
  • Post-graduate doctoral degree (1983), Une approche du diagnostic en psychomotricité (An Approach to Diagnosis in Psychomotor Skills), University of Nice.
  • Phd accreditation to supervise research (HDR), Les communications non verbales chez les jeunes enfants, approche développementale (Non-verbal communication in young children), Paris 8 University (1992).
  • Psychologist at the University Hospital of Toulouse (1975 to 2004), followed up care of children with hypothyroidism, performed diagnoses and child psychotherapy, created and directed the diagnosis and assessment unit for autism, involved in a scientific school integration program for children with autism (SESSAD) since 2007.
  • Research Professor of Psychology at the University of Toulouse le Mirail since 1992: recruited as an associate professor and lecturer (authorisation to hold concurrent positions with the university hospital), nominated for a teaching position in 1994, 1st class professor in September 2003, exceptional class in 2010, Scientific Excellence awards since 2010. Teaches Licence1, Licence3 (undergraduate curriculum up to the Bachelor’s degree); Master1, Master2 Professional (Masters of Professional Studies) and Master2 Research (postgraduate curriculum up to the Master’s degree). Lectures and seminars, research report and thesis supervisor (5 current theses, one as co-director); in the last four-year plan, defended 6 theses and co-redirected one with UQAM).
  • Delivery of specific training in developmental psychopathology: Project leader for the professional curriculum, Troubles neurodéveloppementaux et prévention des inadaptations (Neurodevelopmental disorders and prevention of maladapations). Instituted the research curriculum Neuropsychologie et neurosciences cliniques (Neuropsychology and clinical neurosciences) with the Toulouse 3, Grenoble 2 and Lyon 2 universities. Created the European-level University continuing education diploma Autisme et autres troubles du développement (Autism and other developmental disorders). Guest Professor at Uquam (2006), and currently lecturing at the Belgian University of Mons and at the Swiss Fribourg University.
  • Autism
  • Screening
  • Early intervention

TEAM

Catherine Arnaud, MD PhD.

  • Lead of the research team “Perinatal epidemiology and childhood disabilities, Adolescent Health”, part of the joint Research Unit UMR 1027 Inserm, Toulouse III University (Epidemiology and public health analyses: risks, chronic conditions and handicaps, PI S Andrieu). The team comprises 15 senior researchers, 1 junior researcher, 7 PhD students, 5 engineers, statistician and project managers.
  • Chair of the SCPE network (Surveillance of cerebral palsy in Europe), established in 1998, bringing together population data on Cerebral Palsy (CP) to inform and improve the understanding of CP. It currently comprises about 18 active registers which contribute data to the SCPE common database, as well as invited experts in particular fields. In total it involves 31 partners in 24 European countries.
  • Director of the Register of Childhood disabilities in Haute-Garonne region, France
  • Member of the French Committee of Scientific Evaluation of population-based registers
  • Member of the Steering Committee of the National Cohort EPIPAGE2 (8,500 infants born very preterm and followed-up until the age of 12 years); PI in Midi-Pyrénées region; Member of the Steering Committee and PI of the research group “Child development” of the birth-cohort ELFE (18,500 children from the general population, followed until 20 years of age)
  • Member of the Steering Committee of Federative Research Institute on Handicap (PI. S POIRAUDEAU), PI of the research group “Childhood disabilities”
  • Member of the Scientific committee of the CNSA (National Funds for solidarity and autonomy) Scientific Chairs of excellence on Handicap
  • Children and adolescents with disabilities: determinants of prevalence rates, schooling and inclusion, quality of life, health inequalities. Perinatal complications: determinants and outcomes. Very premature babies: early identification and prevention, evaluation of early interventions.
Catherine Arnaud, MD PhD
Catherine Arnaud, MD PhDAssociate Professor
Epidemiology and Public Health, University of Toulouse III Paul Sabatier, University Hospital (Clinical epidemiology unit), Toulouse
Jeanne Kruck, PhD
Jeanne Kruck, PhDLecturer. Research assistant 1997-2002
Years of experience: 18
Specific expertise: ASD diagnosis and intervention; ASD services.

Jeanne Kruck, PhD.

  • Phd in Psychology, Toulouse University 1996 (on “early diagnosis in autism”)
  • Master’s Thesis on “detection of early signs with ADOS”, Toulouse University
  • ADOS-G Clinical and Research Training, 1998
  • ADI-R Clinical and research training, 1998
  • Conferences, workshops on ASD, 2008-present
  • Assessment in autism (ADOS, ADI-R, SCQ)
  • ASD research on early detection
  • ASD research on early intervention

Quentin Guillon, PhD.

  • PhD in Psychology, Toulouse University 2014 (on “eye tracking for early diagnosis in autism”)
  • Master’s Thesis on “head circumference in autism”, Toulouse University
  • ADOS-G Clinical and Research Training, 2000
  • ADI-R Clinical and research training, 2000
  • Conferences, workshops on ASD, 2013-2014
  • Assessment in autism (ADOS, ADI-R)
  • Eye tracking studies
  • ASD research on early detection
Quentin Guillon, PhD.
Quentin Guillon, PhD.Post-Doctoral researcher
Years of experience: 6
Specific expertise: ASD assessment, eye tracking.
Sophie Baduel, PhD
Sophie Baduel, PhDPost-Doctoral researcher
Years of experience: 7
Specific expertise: Screening, early diagnosis, ASD assessment, early intervention.

Sophie Baduel, PhD.

  • Phd in Psychology, Toulouse University 2013 (on “screening in autism”)
  • Master’s Thesis on “learning specific functioning in autism”, Toulouse University.
  • ADOS-G Clinical and Research Training, 2000.
  • ADI-R Clinical and research training, 2000.
  • Conferences, workshops on ASD, 2012-2014
  • Assessment in autism (ADOS, ADI-R, M-CHAT, CHAT)
  • ASD research on early detection

Lucie Bouvet, PhD.

  • PhD in Psychology, Grenoble University 2012 (on “musical cognition in ASD”).
  • Master’s Thesis on “absolute pitch in autism”, Grenoble University.
  • ADOS-G Clinical and Research Training, 2015.
  • ADI-R Clinical and research training, 2015.
  • Conferences, workshops on ASD, 2008-present.
  • Assessment in autism (ADOS, ADI-R, neuropsychological).
  • ASD research on cognitive profile.
Lucie Bouvet, PhD.
Lucie Bouvet, PhD.Lecturer
Years of experience: 9
Specific expertise: ASD diagnosis, cognitive neuropsychology