Autism spectrum disorder (ASD) – a group of conditions characterized by deficits in social interactions and communication skills, as well as the presence of stereotypic and repetitive behaviors – is estimated to affect 1% of the global population.[i] A recent review of published data concluded that the median of prevalence estimates of autism spectrum disorder worldwide was 62/10,000.[ii] ASD is almost five times more common among boys (1 in 54) than girls (1 in 252), according to the US Centers for Disease Control and Prevention.[iii] ASD commonly co-occurs with other developmental, psychiatric, neurologic, chromosomal, and genetic diagnoses. The co-occurrence of one or more non-ASD developmental diagnoses is 83%, and the co-occurrence of one or more psychiatric diagnoses is 10%.[iv] Asperger syndrome (ICD-10)/Asperger disorder (DSM-IV) differs from typical Autism by its relative preservation of linguistic and cognitive development.

Therapies to treat the three core symptoms of autism – social interaction abnormalities, impaired verbal and non-verbal communication, and repetitive, stereotyped behavior – represent a major area of unmet need.[v] Today, there is significant interest in new treatments to improve neurocognition – mental processes linked with specific areas of the brain – for individuals with an ASD.

As a step to gain insight into the perspectives and needs of those impacted by Autism spectrum disorder (ASD), researchers from Quintiles conducted a survey of ASD patients and caregivers. The research utilized the MediGuard.org patient community – a component of Quintiles’ Digital Patient Unit – which has more 2.6 million registered users in the US, Europe, and Australia. MediGuard.org is a free medication monitoring service that provides patients with safety alerts, drug recalls, updates, and checks for possible drug interactions.

The digital patient survey aimed to:

  • Identify key features related to ASD:
    • Disease history and duration of diagnosis
    • Daily symptoms of concern
    • Therapy type for each symptom
    • Caregiver verbatim comments about the patient's disorder
    • Subject’s verbatim comments regarding awareness of their own disorder
    • Family impact
  • Understand the daily challenges and concerns of both caregivers and subjects diagnosed with ASD
  • Find out what actions caregivers and subjects with ASD have undertaken to manage the condition
  • Determine caregiver and subject knowledge of and interest in participating in clinical trials in ASD.

The survey responses of 47 out of 174 adults/caregivers[1] and 50 of 97 caregivers of pediatric subjects met the inclusion profile for this survey.

Detailed findings of the survey are described in this paper.