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