Brief Report: Positive Caregiver Perceptions on Receiving Research Summary Reports in Autism Longitudinal Research.

Purpose: Although participating in research is often presented as something that can 'help others in the future', research participants may also benefit from accessing and understanding their own research data. However, participant attitudes toward receiving individual data via research reports are under researched. This study examined participant perceptions of research reports within the context of the pilot phase of the Pediatric Autism Research Cohort (PARC) Study.

The Association Between Autism Symptomatology and Adaptive Functioning Over Six Months: Findings from the Pilot Phase of the PARC Study.

Purpose: In the context of developmental trajectories, the association between adaptive functioning and core autism symptomatology remains unclear. The current study examines the associations of adaptive behavior with autism symptom sub-domains and with different facets of symptom expression.

Methods: Participants include 36 children with a recent diagnosis of autism (33 males; mean age = 56.

The Pediatric Autism Research Cohort (PARC) Study: protocol for a patient-oriented prospective study examining trajectories of functioning in children with autism.

Introduction: The developmentally variable nature of autism poses challenges in providing timely services tailored to a child's needs. Despite a recent focus on longitudinal research, priority-setting initiatives with stakeholders highlighted the importance of studying a child's day-to-day functioning and social determinants of health to inform clinical care. To address this, we are conducting a pragmatic multi-site, patient-oriented longitudinal investigation: the (.

Investigating the Associations Between Child Autistic Symptoms, Socioeconomic Context, and Family Life: A Pilot Study.

The day-to-day experience of families with an Autistic child may be shaped by both, child characteristics and available resources, which often are influenced by the socioeconomic context of the family. Using a socioecological approach, this study explored the quantitative associations between child autistic symptoms, family socioeconomic status, and family life. Data came from the Pediatric Autism Research Cohort-PARC Study (pilot).

Health-related quality of life for extremely low birth weight adolescents in Canada, Germany, and the Netherlands.

Objective: The goal was to compare health-related quality of life of 12- to 16-year-old adolescents born at an extremely low birth weight in regional cohorts from Ontario (Canada), Bavaria (Germany), and the Netherlands.

Methods: Patients were extremely low birth weight survivors from Canada, Germany, and the Netherlands. Health-related quality of life was assessed with Health Utilities Index 3.

Self-perceived health-related quality of life of former extremely low birth weight infants at young adulthood.

Objectives: The goals were to compare the self-reported, health-related quality of life of former extremely low birth weight and normal birth weight infants at young adulthood and to determine whether there were any changes over time.

Methods: A prospective, longitudinal, population-based study with concurrent control subjects was performed. We interviewed 143 of 166 extremely low birth weight survivors (birth weight: 501-1000 g; 1977-1982 births) and 130 of 145 sociodemographically comparable, normal birth weight, reference subjects.

School-age outcomes in children who were extremely low birth weight from four international population-based cohorts.

Objective: The aim of this study was to determine whether learning and school problems in extremely low birth weight (ELBW) and reference children differ between cohorts in different countries.

Methods: Participants were 4 international population-based cohorts of ELBW survivors who were 500 to 1000 g birth weight from New Jersey, central-west Ontario, Bavaria, and Holland (n = 532) and were followed longitudinally from birth. Psychometric data were collected independently and prospectively and included at least 1 measure of cognitive status and 1 measure of achievement administered to the children between the ages of 8 and 11 years.

Psychopathology and social competencies of adolescents who were extremely low birth weight.

Background: We have previously shown that infants who were extremely low birth weight (ELBW) are particularly vulnerable to problems related to inattention and hyperactivity at school age. It is not known whether these problems persist to adolescence.

Objective: To explore and compare the levels of psychopathology in a regional cohort of ELBW infants and sociodemographically matched term controls as reported by teens and their parents.

Self-esteem of adolescents who were born prematurely.

Objective: To determine whether there are any differences between the self-esteem of a cohort of adolescents who were extremely low birth weight (ELBW) in comparison with term controls (Cs); and to test the associations between self-esteem and several predefined predictor variables.

Background: Self-esteem is considered to play a significant role in psychological adjustment and scholastic success. Little information exists on how adolescents who were ELBW regard themselves.