Prevalence of Autistic Spectrum Disorder (ASD) in Children With Haemophilia

NCT05138224 | Completed

• 1 other identifier: 10MH17
• Study Type: observational
• Target: 82
• Locations: 0 countries
• Sites: N/A

Brief Summary

Parents of children with haemophilia will be invited to complete 3 questionnaires to look for traits present in ASD. With consent teacher will complete a further 2 questionnaires. If all 3 questionnaires are above threshold, then with consent of the family the child will be referred for further investigation. There are already pre-existing children with ASD who will be exempt from the study, but included in the data analysis of prevalence. The results of the 3 questionnaires will be used to identify a profile of social communication in children with haemophilia.

Conditions

Haemophilia; Autism Spectrum Disorder; Social Communication Disorder; Attention Deficit Hyperactivity Disorder

Outcome Measures

Primary Outcomes (1)

• Prevalence of autism spectrum disorder in boys with haemophilia at Great Ormond St Hospital

  The number of children with a diagnosis of ASD at GOSH

  Within 2 weeks of when the participant consented- measured once

Secondary Outcomes (4)

• Social Communication Questionnaire

  Within 2 weeks of when the participant consented-measured once

• Childrens communication Checklist

  Within 2 weeks of when the participant consented-measured once

• BRIEF

  Within 2 weeks of when the participant consented-measured once

• Number of children being given a diagnosis of ASD or other following referral for ongoing assessment following positive scores on questionnaires

  From when study started October 2014 to study end July 2017

Eligibility Criteria

• Age: 5 Years - 16 Years
• Gender Eligibility Details: All boys with haemophilia at Great Ormond St Hospital haemophilia centre
• Age Groups: Child (0-17)
• Sampling Method: Non-Probability Sample

Study Population

All boys with all severities of haemophilia aged 5-16 years

You may qualify if:

• All boys with mild, moderate or severe haemophilia will be offered to participate in the questionnaire completion

You may not qualify if:

• boys with a pre-existing diagnosis of ASD will be excluded from questionnaire completion but will be included in the prevalence analysis

Sponsors & Collaborators

• Great Ormond Street Hospital for Children NHS Foundation Trust: lead

Related Publications (15)

• Kulkarni R, Lusher JM. Intracranial and extracranial hemorrhages in newborns with hemophilia: a review of the literature. J Pediatr Hematol Oncol. 1999 Jul-Aug;21(4):289-95. doi: 10.1097/00043426-199907000-00009.

  PMID: 10445891 BACKGROUND

• Ljung RC. Intracranial haemorrhage in haemophilia A and B. Br J Haematol. 2008 Feb;140(4):378-84. doi: 10.1111/j.1365-2141.2007.06949.x. Epub 2007 Dec 13.

  PMID: 18081890 BACKGROUND

• Bladen M, Khair K, Liesner R, Main E. Long-term consequences of intracranial haemorrhage in children with haemophilia. Haemophilia. 2009 Jan;15(1):184-92. doi: 10.1111/j.1365-2516.2008.01815.x. Epub 2008 Aug 13.

  PMID: 18702617 BACKGROUND

• Spencer ML, Wodrich DL, Schultz W, Wagner L, Recht M. Inattention, hyperactivity-impulsivity, academic skills and psychopathology in boys with and without haemophilia. Haemophilia. 2009 May;15(3):701-6. doi: 10.1111/j.1365-2516.2009.01993.x. Epub 2009 Feb 27.

  PMID: 19298375 BACKGROUND

• Baird G, Simonoff E, Pickles A, Chandler S, Loucas T, Meldrum D, Charman T. Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Lancet. 2006 Jul 15;368(9531):210-5. doi: 10.1016/S0140-6736(06)69041-7.

  PMID: 16844490 BACKGROUND

• Baron-Cohen S, Scott FJ, Allison C, Williams J, Bolton P, Matthews FE, Brayne C. Prevalence of autism-spectrum conditions: UK school-based population study. Br J Psychiatry. 2009 Jun;194(6):500-9. doi: 10.1192/bjp.bp.108.059345.

  PMID: 19478287 BACKGROUND

• Chandler S, Charman T, Baird G, Simonoff E, Loucas T, Meldrum D, Scott M, Pickles A. Validation of the social communication questionnaire in a population cohort of children with autism spectrum disorders. J Am Acad Child Adolesc Psychiatry. 2007 Oct;46(10):1324-1332. doi: 10.1097/chi.0b013e31812f7d8d.

  PMID: 17885574 BACKGROUND

• Offord DR, Boyle MH, Racine Y, Szatmari P, Fleming JE, Sanford M, Lipman EL. Integrating assessment data from multiple informants. J Am Acad Child Adolesc Psychiatry. 1996 Aug;35(8):1078-85. doi: 10.1097/00004583-199608000-00019.

  PMID: 8755805 BACKGROUND

• Bishop DV. Development of the Children's Communication Checklist (CCC): a method for assessing qualitative aspects of communicative impairment in children. J Child Psychol Psychiatry. 1998 Sep;39(6):879-91.

  PMID: 9758196 BACKGROUND

• Bishop DV, Baird G. Parent and teacher report of pragmatic aspects of communication: use of the children's communication checklist in a clinical setting. Dev Med Child Neurol. 2001 Dec;43(12):809-18. doi: 10.1017/s0012162201001475.

  PMID: 11769267 BACKGROUND

• Norbury CF, Nash M, Baird G, Bishop D. Using a parental checklist to identify diagnostic groups in children with communication impairment: a validation of the Children's Communication Checklist--2. Int J Lang Commun Disord. 2004 Jul-Sep;39(3):345-64. doi: 10.1080/13682820410001654883.

  PMID: 15204445 BACKGROUND

• World Health Organization. The ICD-10 Classification of Mental and Behavioural Disorders: Diagnostic Criteria for Research. WHO, 1993.

  BACKGROUND

• Rutter, M., Bailey, A. & Lord,C. (2003) Social Communication Questionnaire (SCQ).Western Psychological Services.

  BACKGROUND

• Gioia, G.A., Isquith, P.K., Guy, S.C., Kenworthy, L. (2000) Behaviour rating inventory of executive functioning Florida: Psychological Assessment Resources Inc.

  BACKGROUND

• Bishop DVM. (2003) Children's Communication Checklist Version 2 (CCC2). Psychological Corporation.

  BACKGROUND

MeSH Terms

Conditions

Hemophilia A; Autism Spectrum Disorder; Social Communication Disorder; Attention Deficit Disorder with Hyperactivity

Condition Hierarchy (Ancestors)

Blood Coagulation Disorders, Inherited; Blood Coagulation Disorders; Hematologic Diseases; Hemic and Lymphatic Diseases; Coagulation Protein Disorders; Hemorrhagic Disorders; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Child Development Disorders, Pervasive; Neurodevelopmental Disorders; Mental Disorders; Communication Disorders; Attention Deficit and Disruptive Behavior Disorders

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: November 25, 2020
• First Posted: November 30, 2021
• Study Start: September 1, 2014
• Primary Completion: August 1, 2018
• Study Completion: December 1, 2019
• Last Updated: November 30, 2021

Record last verified: 2021-11