AUTISM SPECTRUM DISORDERS 2013: TRANSFORMING INNOVATION INTO POLICY

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1 15th International Congress of ESCAP 6th 10th July 2013, Dublin, Ireland AUTISM SPECTRUM DISORDERS 2013: TRANSFORMING INNOVATION INTO POLICY Joaquín Fuentes, MD DonosDa / San SebasDán, Basque Country, Spain

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4 All started 70 years ago

5 INNOVATION All started 70 years ago For how long will it last? 1. New epidemiological data 2. New diagnostic system 3. New evidence-based guidelines POLICY 4. Community inclusion 5. European research ventures

6 1. New epidemiological data A STUDY OF STUDENTS FROM 7 TO 12 YEARS OF AGE IN SOUTH KOREA FOUND A PREVALENCE OF ASD OF 2.64% (1 / 38) Young- Shin Kim et al. Am J Psychiatry 168 (2011)

7 Medical records / Registries / Educational records vs. Two-stage total population surveys: Are they is feasible?

8 67% agreed 64% replied 24% repied 63% replied 87% consented 70% consented 71% consented Young- Shin Kim et al. Am J Psychiatry 168 (2011)

9 Young- Shin Kim et al. Am J Psychiatry 168 (2011)

10 A STUDY OF STUDENTS IN CAMBRIDGESHIRE, AGES 5 TO 9 + S.E.N. REGISTRY COUNT, FOUND A PREVALENCE OF ASD OF 1.5% (RATIO OF KNOWN / UNKNOWN CASES ESTIMATED IN 3:2) Baron- Cohen Simon et al. BJ Psychiatry 194 (2009)

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12 A STUDY OF A BIRTH COHORT IN ICELAND FOUND THAT ASD WAS IDENTIFIED IN A NATIONAL TERTIARY SERVICE IN 1.2% OF THE CHILDREN (17% OF THEM HAD MEDICAL CONDITIONS) Evald Saemundsen et al. BMJ Open 3 (2013)

13 A STUDY OF A BIRTH COHORT IN ICELAND FOUND THAT ASD WAS IDENTIFIED IN A NATIONAL TERTIARY SERVICE IN 1.2% OF THE CHILDREN (17% OF THEM HAD MEDICAL CONDITIONS) Evald Saemundsen et al. BMJ Open 3 (2013)

14 IN GIPUZKOA, SPAIN, A TWO- STAGE STUDY OF CHILDREN AGES 4 TO 6 + CASES SUPPORTED IN THE REGIONAL ASD FREE OPTIONAL CLINIC, SHOWED THAT 1 / 289 RECEIVES TERTIARY SERVICES Fuentes Joaquin et al. Unpublished. Presented at IMFAR 2010

15 CAST SCQ Scoring Research team

16 CAST SCQ Scoring Research team

17 WE HAVE THE TECHNOLOGY BUT NEED MORE COLLABORATION FROM OUR COMMUNITIES

18 1. New epidemiological data TOUGHTS: 1. There are more cases than we had considered 2. Awareness of the community remains limited and skewed 3. We have good instruments and ways to detect ASD 4. We also need to consider ASD in other clinical populadons People do not exist when you cannot see them

19 2. New diagnosdc system

20 2. New diagnosdc system: ASD in DSM5 1. Neurodevelopmental disorder 2. Single umbrella disorder: ASD 3. Three symptom domains become two: Social / communication Repetitive behaviors 4. Does not exclude commorbidities 5. Requires defining level of clinical impairment 6. Allows specifiers: Medical / Genetic / Environment / Verbal / Cognitive

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23 NO AN ASD DISORDER!!

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26 Any ASD: 2.64% Autistic Disorder: 0.94% Other ASDs: 1.70% Did not separate between Autistic Disorder and Other ASDs Autistic Disorder: 28% Autistic Disorder: 19% Other ASDs: 53% Autistic Disorder: 36% Asperger Disorder: 10% PDD-NOS: 54%

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28 2. New diagnosdc systems TOUGHTS: 1. Most changes make sense and fit in with knowledge 2. Researchers interested in expanding on specifiers Meng- Chuan Lai et al., PLOS Biology (2013) 3. It will probably not modify prevalence for AD and AsPD 4. No reason, no trials, to jusdfy moving SCD out of ASD. Unpredictable consequences. People are not seen if you do not look at them

29 3. New evidence- based guidelines

30 ASD STUDY GROUP OF THE CARLOS III INSTITUTE OF HEALTH ( )

31 EARLY DETECTION DIAGNOSIS Alta como usuario en revneurol.com Le permitira tener acceso gratuito a todos los artículos de nuestra página Web. Alta como usuario en revneurol.com Le permitira tener acceso gratuito a todos los artículos de nuestra página Web. Revista Presentación Índices Cómo publicar Búsquedas Avanzadas Enlaces Preguntas Frecuentes Información de interés para nuestros autores Usuarios Nuevo Usuario Su Espacio Modificar y datos Recordar Contraseña REV NEUROL 2005; 41 (4): Revista Presentación Índices Cómo publicar Búsquedas Avanzadas Enlaces Preguntas Frecuentes Información de interés para nuestros autores Usuarios Nuevo Usuario Su Espacio Modificar y datos Recordar Contraseña REV NEUROL 2005; 41 (5): RESEARCH TREATMENT Alta como usuario en revneurol.com Alta como usuario en revneurol.com Le permitira tener acceso gratuito a todos los artículos de nuestra página Web. Le permitira tener acceso gratuito a todos los artículos de nuestra página Web. Revista Presentación Índices Cómo publicar Búsquedas Avanzadas Enlaces Preguntas Frecuentes Información de interés para nuestros autores Usuarios Nuevo Usuario Su Espacio Modificar y datos Recordar Contraseña REV NEUROL 2005; 41 (6): Revista Presentación Índices Cómo publicar Búsquedas Avanzadas Enlaces Preguntas Frecuentes Información de interés para nuestros autores Usuarios Nuevo Usuario Su Espacio Modificar y datos Recordar Contraseña REV NEUROL 2006; 43 (7):

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35 ? 2010 December, 1999

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37 June, 2012 March, 2013

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40 3. New evidence- based guidelines TOUGHTS: 1. Free availability of a coherent body of knowledge 2. Although high quality evidence is lacking, there is a significant internadonal consensus 3. Publicized alternadve treatments have no evidence 4. Strong guidelines agreement with stakeholders People are en7tled to updated and personalized support

41 4. Community inclusion

42 State of Spain BASQUE COUNTRY Size Population Density Government Income per person 7,200 Km 2 2,175, / Km 2 Autonomous Community Spain (128 / UE27=100)

43 Purchasing Power Parity (EU27: 100) Luxembourgh: 274 USA: 148 Basque Country: 133 Japan: 105 Romania: 45 UN Human Development Index: life expectancy + education + PPP Norway / Iceland: 0,968 Basque Country: 0,964 (1º in Spain) USA 0,951 Spain 0,949 Zimbabwe: 0,140

44 Donostia / San Sebastián GIPUZKOA COUNTY

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47 ASD TERTIARY LEVEL REGIONAL PROGRAM GUTENA GAUTENA Funding (92% + 8%) - Basque Health Service: 4% - Families / persons with ASD: 8% (if subsidized) - Public Educational Authority: 32% - Social Services Department: 56%

48 Gipuzkoa County workers (84% with disability) GAUTENA

49 Missouri Autism Guidelines Initiative, 20012

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51 JOINTLY DEFINED INDIVIDUALIZED SUPPORT PROGRAM

52 APPROVED INDIVIDUALIZED SUPPORT PROGRAM

53 RESULTS OF THE INDIVIDUALIZED SUPPORT PROGRAM

54 BIENNIAL LEVELS OF SATISFACTION Scoring by areas BIENNIAL LEVELS OF SATISFACTION Scoring by areas GAUTENA

55 BIENNIAL LEVELS OF SATISFACTION Scoring by areas BIENNIAL LEVELS OF SATISFACTION Scoring by areas GAUTENA

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60 4. Community inclusion TOUGHTS: 1. Have a vision and ensure mulddepartamental support 2. Nothing about me, without me 3. Follow best pracdce guidelines 4. Search for outcomes People require assessment of mul7ple outcomes

61 5. European research ventures

62 e-mintza (App)

63 hlp://fundacionorange.es/emintza.html downloads 98 Countries Windows, Mac, Android and soon, ipad

64 European Autism Interventions - A Multicentre Study for Developing New Medications (EU-AIMS) - is the largest single grant for autism in the world, and the largest for the study of any mental health disorder in Europe. 30 M

65 6 Pharma industries 14 European Centers 3 SME

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69 WP3 WP4

70 WP5 EU-AIMS 1. In vitro systems development 2. Animal model development 3. Translational research development 4. Clinical research development 5. Management of data and biological samples

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72 5. European research ventures TOUGHTS: 1. The moment has finally arrived to Europe! 2. We will have new effecdve medicadons 3. Academia + Government + Industry + Stakeholders CAN DO IT! 4. Its impact will revitalize our European CAP Research is an ethical impera7ve in ASD

73 Take home messages:

74 People do not exist when you cannot see them People are not seen if you do not look at them People are en7tled to updated and personalized support People require assessment of mul7ple outcomes Research is an ethical impera7ve in ASD

75 U.Salamanca

76 15th International Congress of ESCAP 6th 10th July 2013, Dublin, Ireland AUTISM SPECTRUM DISORDERS 2013: TRANSFORMING INNOVATION INTO POLICY