The goal of this research study is to learn about experiences with repetitive behaviors from autistic teens and their families. In order to learn about your experiences with repetitive behaviors, you will be invited to complete a set of online questionnaires about your (or your teen's) experiences. The goal of this study is to promote advocacy and transparency for autistic teens' lived experiences. A small subset of teens may also be asked to complete a brain MRI and additional behavioral assessments, if they are interested. Participating in the MRI and further behavioral assessments is voluntary and is not required to complete the online surveys.

The purpose of this research study is to test how well a common, standardized quality of life tool measures quality of life among children on the autism spectrum who are minimally verbal or have an intellectual disability. Parents/ caregivers of autistic children (ages 5-17) who are minimally verbal or have an intellectual disability are eligible to participate in the study.

The Building Up Food Flexibility and Exposure Treatment (BUFFET) program helps autistic children 8-12 years old to be more flexible with trying new or non-preferred foods. BUFFET-Snack is a brief version of this treatment program. The goal of this study is to see if families can complete BUFFET-Snack and if they like it. BUFFET-Snack is a cognitive behavioral therapy. It will be a good fit for children who can communicate with full sentences and have some back-and-forth conversation skills.

The purpose of this study is to understand how children's brains process sounds and language. Children with Autism Spectrum Disorder (ASD), Intellectual and Developmental Delay (IDD), or Developmental Language Disorder (DLD) often have trouble understanding sounds that are too close together compared to Typically Developing Controls (children without ASD, IDD, or DLD). Fast changes in speech can be hard for children. This may be awkward during conversations and difficult in social situations. This research will see if trouble with processing sounds contributes to language difficulties in children with ASD, IDD, and/or DLD.

PEDSnet is launching a series of Research Prioritization Studies to identify key gaps in knowledge and generate new, impactful evidence in child health care. PEDSnet is seeking input from patients, parents/caregivers, and healthcare professionals to learn which research topics matter most to them.

Each study invites stakeholders to share their perspectives on what is most important. This input will help develop prioritized research questions that can guide future studies and improve health outcomes for children.

The following Research Prioritization Studies are currently seeking participants:

1) Intellectual and Developmental Disabilities

PEDSnet and DBPNet seek youth (13-24), parents, and clinicians/scientists for the Intellectual and Developmental Disabilities (IDD) Research Prioritization Study. The goal is to develop a prioritized list of research questions that will immediately impact patient health outcomes, focusing on children with IDD.

Youth and Parent participants will answer open-ended questions on Viva Engage, a Microsoft platform, to share their thoughts and opinions. The study is entirely online, and parents and youth will be compensated for their time. To participate or learn more, complete our eligibility screener.

Clinicians or Researchers will answer a one time survey answer a two-question open-ended survey about their experiences and opinions as a clinician or scientist in this field.

Eligibility Criteria:

• • Identify as a:
    • • Youth between the ages of 13-24 with:
        • Attention Deficit Hyperactivity Disorder
        • Autism Spectrum Disorder
        • A communication or language disorder
        • Learning disability
        • Intellectual disability or Developmental Delays
      • Parent with a child (of any age) diagnosed with:
        • Attention Deficit Hyperactivity Disorder
        • Autism Spectrum Disorder
        • A communication or language disorder
        • Learning disability
        • Intellectual disability or Developmental Delays
      • Clinician or researcher of the following disciplines:
        • Developmental Pediatrics
        • Occupational or Speech Therapy
        • Psychology
        • Primary Care/General Pediatrics
        • Advanced Practice Nurses
      • Read and write comfortably in English;
      • Be comfortable using a computer or smartphone;
      • Be comfortable sharing personal experiences and answer follow-up questions when applicable.

Youth and Parent Eligibility Survey: https://redcap.link/15xbvbie

Clinician/Researcher Survey: https://redcap.link/jtbn3zkt

2) Pulmonary

PEDSnet is looking to identify key research priorities to help improve health outcomes for children and youth with tracheostomy and chronic ventilator dependence. The goal of this study is to find out what is most important to patients, parents/caregivers, and healthcare team members who have or support youth with tracheostomy and chronic ventilator dependence.

Participants will begin by completing a one-time online survey to share their thoughts and opinions. Those who complete the survey may be invited to a join a follow-up activity where they will help collaboratively rank a list of research topics with other research participants based on their importance and feasibility of research. To participate or learn more, please begin by taking our survey.

Eligibility Criteria:

• Be at least 18 years old;
• Identify as a:
  • Patients with current or prior tracheostomy and mechanical ventilator dependence;
  • Healthcare Team Members involved in care of pediatric patients with tracheostomy and mechanical ventilator dependence. (This may include: inpatient or outpatient providers, nurses, home health care providers, respiratory therapists, social workers, care managers, clinician-researchers etc. );
  • Parents or caregivers of a child with current or prior tracheostomy and mechanical ventilator dependence;

• Read and write comfortably in English or Spanish;
• Be comfortable using a computer or smartphone;
• Be comfortable sharing personal experiences and answer follow-up questions when applicable.

Survey Link: https://redcap.link/cujrbqjl

Conversations are important for getting along in everyday life, but we don't really know what makes them successful. This study aims to find out what factors help make conversations better. By looking at different talking styles and techniques, we want to learn how to have more effective and enjoyable conversations. We are seeking volunteers between 12-15 years old both with and without autism and their families to partner with us.

Children's Hospital of Philadelphia and Childrens National Hospital are studying daily living skills like cooking, cleaning, and money management and their impact on quality of life for autistic individuals. This study is funded by the National Institutes of Health (NIH) and is led by Ben Yerys, PhD and Lauren Kenworthy, PhD.

The Social Coordination study aims to explore how people express themselves through facial expressions and body movements. We need help from adolescents ages 12 to 17 who have an Autism diagnosis or those who may be seeking a professional Autism evaluation to better understand behaviors they experience. We also need help from children and adolescents ages 8-17 who are typically developing. By utilizing new technology, researchers hope to identify differences in these expressions and movements. This information could lead to better methods for recognizing and understanding Autism and other behavioral conditions.

The mission of SPARK is to ignite research at an unprecedented scale to improve lives by advancing our understanding of autism. To join this national autism research cohort, individuals with a professional diagnosis of autism and their biological family members will be asked to share information about their medical and family history, as well as provide a DNA sample.