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Overview

咕咕叫ent research areas

Multi-diagnosis studies

Measuring outcomes of multidisciplinary neurodevelopmental evaluations — validity, reliability and feasibility

  • PI: David Stein, PsyD
  • Participants: adults (parents/guardians), any diagnosis

This study aims to measure the effect of developmental evaluations on patients and families by testing the validity and reliability of a new survey, the Developmental Evaluation Effectiveness Survey (DEES). Developmental evaluations involve comprehensive assessment by a pediatrician and psychologist from the Developmental Medicine Center (DMC) at Boston Children’s Hospital. Families who wish to participate in this study will be asked to fill out the DEES survey, along with a few others, on three occasions, twice before their scheduled evaluation in the DMC and once five months after the initial evaluation. The DEES survey will be administered to families via a secure email and login to TriVox health, an online survey tool.

For full participation details, contact us viae-mail.

Integrated Clinical Information Sharing System ICISS (TriVox Health): Implementation and evaluation of a web-based patient management and monitoring system for chronic conditions

TriVox Health is a web-based patient management and monitoring system designed to track patients’ disease symptoms and response to therapy overtime. This study is a robust evaluation of the TriVox Health implementation and effectiveness that will help to inform the generalizability of TriVox Health use outside of Boston Children’s Hospital. Patients and families will be asked to complete questionnaires about the health care services they receive, the costs of attaining those services, and their experiences with their providers. All research questionnaires will be completed through TriVox Health.

For more information, please contactSarah.Weas@childrens.harvard.edu

Quality of Life for Families of Children Diagnosed with Comorbid Attention Deficit Hyperactivity Disorder and an Autism Spectrum Disorder

We are comparing the impact on family quality of life among children ages 6 to 12 years diagnosed with Autism Spectrum Disorder (ASD) only, Attention Deficit Hyperactivity Disorder (ADHD) only, and comorbid ADHD and ASD who are followed at Boston Children’s Hospital’s Developmental Medicine Center. As part of the study, parents complete surveys on family demographics, medications and side effects, attention and behavior ratings, their child’s overall level of functioning, and family quality of life.

Down syndrome studies

Roche Clinical Trial

The purpose of this study is to investigate the safety and potential effectiveness of an investigational drug to help children with Down syndrome with learning, memory, and performance of daily activities. Participants will receive either the study drug or an inactive placebo (which contains no medicine). Parents/caregivers will be asked questions about the participant’s medical history and behaviors. Participation also includes physical and neurological exams, behavioral and cognitive testing, and diagnostic (blood and urine) tests. Participants will receive parking, meal vouchers, and a gift card.

For more information pleaseemailor call us at 857-218-5472.

Rett syndrome studies

Adapted MSEL for children with language and motor impairment (RETT-IRSF)

Phase 2 is a double-blinded, placebo-controlled cross-over study designed to test the efficacy of IGF-1 for treatment of Rett syndrome. The Nelson Lab uses both EEG and a cognitive developmental assessment to evaluate changes in cortical function across treatment. For the EEG, we do this by evaluating two well characterized systems in the brain (the auditory system and the visual system). We use traditional ERP paradigms as well as steady-state presentation of auditory and visual stimuli and power spectra analysis to assess cortical function of V1 and auditory cortex. In addition, the Nelson Lab has adapted the Mullen Scales of Early Learning for use with children with Rett syndrome.

自闭症谱系障碍研究

Feasibility and Psychometric Properties of the Autism Spectrum Disorder Parent Report for Outcome Monitoring (ASD-PROM)

  • PI:April Levin, MD, and Carolyn Bridgemohan, MD
  • Participants: parents of children with autism spectrum disorders

This research study aims to evaluate a questionnaire developed to monitor how children with autism spectrum disorders (ASD) progress over time, to determine whether it is useful and practical enough for regular use in the clinic. Eligible families with upcoming clinic visits will be contacted via introductory letter or email.

Phenotypic and Genetic Factors in Autism Spectrum Disorders

We want to find the causes of Autism Spectrum Disorders and other developmental issues. Often, there may be more than one factor involved. Understanding these causes will increase our ability to identify developmental issues early and find better treatments. With the number of children diagnosed with ASD progressively rising, now is the time to find out why and improve services and options for everyone affected. We depend on families like yours to make this happen!

Biomarkers in Autism Spectrum Disorder: A feasibility study

The purpose of this study is to identify and examine correlations between potential biochemical, behavioral and physical biomarkers in children with ASDs. An additional purpose of the study is to investigate the feasibility of conducting autism biomarker research within the clinical setting and to examine the ability to conduct larger scale clinical translational research.

Parent Perceptions of Meaningful Outcomes in Autism Spectrum Disorder: A Pilot Study

我们提出一个定性的螺栓y to explore parental perspectives regarding meaningful health outcomes, including quality of life, in children diagnosed with ASD. Specific aims are: 1)To elicit parent perspectives regarding meaningful health outcomes in children with ASD 2) To identify family-centered ASD health outcomes amenable for outcome measure development 3) To propose candidate outcome measures for children with ASD.

For more information, please contactMarie Reilly.

Assessing the Reliability and Precision of the PROMIS® Family Belonging Measure for Children with Autism Spectrum Disorders

  • PI: Justin Schwartz, MD
  • Co-PI:Noelle Huntington, PhD, and Carolyn Bridgemohan, MD
  • Participants: 5- to 12-year-olds with ASD

There are many important goals when providing treatment for children with autism, including increasing the child’s involvement with his or her family. The goal of this project was to test an existing measure of Family Involvement to see how well the questions work for kids with autism and their families. Our hope is that this measure can provide one important piece of information about how well our patients are doing.

Body Mass Index (BMI) and BMI Trajectories in Children with Autism Spectrum Disorder

  • PI: Marie Reilly, MD
  • Co-PI:Isaac Kohane, MD, PhD, and Vidhu Thaker, MD
  • Participants: This is an analysis of previously collected BMI data from children 0 to 18 years with a clinical diagnosis of ASD.

Information gathered through Shared Health Research Informatics NEtwork (SHRINE).

ADHD studies

Pilot Investigation of Executive Function Skills and Emotion Regulation Among Children with ADHD

This is a pilot study designed to determine the behavioral and neural profile of children with attention deficit hyperactivity disorder (ADHD) relative to children with autism spectrum disorder (ASD) and typical development (TD) using a battery of executive function tasks emphasizing inhibition. Another aim is to explore the relation between specific aspects of executive function and emotion regulation and externalizing behavior in ADHD.---study only enrolling ADHD kids and typically developing — this is parallel study to a previous one done with ASD patients.

For more information, please contactTessa Clarkson.

Initial validation of the Vanderbilt ADHD Measure for Adolescent Patients in the ICISS Project (TriVox Health)

我们正在评估一项有关儿童的问卷调查ADHD symptoms (the Vanderbilt questionnaire) that has been adapted for use in adolescents and young adults. We will compare these results to another ADHD survey that is already widely used in adolescents/young adults (the Conners survey) to determine if the Vanderbilt is a useful tool to help providers evaluate if you/your child’s ADHD is being managed in the best possible way.

For more information, please contactMaya Sayarath.

Adolescent Substance Use and Addiction Program studies

Validating NIAAA's brief screening guide in youth with chronic medical conditions

The goal of this project is to validate the National Institute on Alcohol Abuse and Alcoholism’s (NIAAA) brief screening tool for use with youth with chronic medical conditions, in order to facilitate standardized screening and improve the response capability of specialty providers who regularly interact with these youth.

For more information please contactJulie Lunstead.

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