chILDRN Interest form
We are seeking professionals and organizations with expertise relevant to the chILD community for one-time consultations running May through October 2026. Interviews are approximately 1 hour; focus groups are 2–4 hours. Please complete this form, and we will be in touch to discuss the best fit for your expertise.
Section 1: Contact Information
Name
*
First Name
Last Name
Email
*
example@example.com
Section 2: Your Role
Select the option that best describes your primary role:
I am a....
*
Clinician (physician / MD / DO)
Clinician-Scientist (combined clinical and research role)
Nurse or Allied Health Professional (NP, PA, RT, PT, OT, Psychologist, social worker, child life specialist, etc.)
Biomedical or Clinical Researcher
Bioinformatics or Data Science Researcher
Pharmaceutical, Biotech, or Medical Device Industry Representative
Diagnostics or Health IT Industry Representative
Health Insurance or Managed Care (Payer)
Health System Administrator or Hospital Leadership
Federal or State Health Policy Official (NIH, FDA, AHRQ, CMS, state agency)
Rare Disease Patient Advocacy Organization Leader
Other
Section 3: Topic(s) of Interest
Please select all topics where your expertise would be most relevant. We will do our best to match you with the right group(s).
Which focus group topic(s) interest you? You may select more than one.
*
Data, Bioinformatics & Diagnostic Trigger System: AI/EHR-based alert systems for rare disease, genetics variant libraries, registry infrastructure, and undiagnosed patient tracking
Physician Education & Outreach Programs: CME program design, rare disease recognition training, EHR-based alerts, reaching generalists and ER providers
Psychosocial & Family Support Programs: Patient Education Library, New patient Oxygen supply kit, Family Peer Mentor Program, and other support programs
Surfactant & Alveolar Filling Disorders (SP-B, SP-C, SP-D, ABCA3, TTF-1, PAP, or related)
NEHI:Neuroendocrine Cell Hyperplasia of Infancy
Immune Dysregulation & Hemorrhage (COPA, SAVI, pulmonary hemorrhage syndromes, multi-system immune conditions)
Airway-Centered & Environmental (Post-infectious bronchiolitis obliterans / PIBO, airway-centered, exposure-related
Developmental & Vascular (Developmental dysplasia, pulmonary vascular disorders, alveolar simplification)
Open to any topic: Please place me where most needed
Not Interested
Would you like to join a working group?You may select more than one.
*
Undiagnosed chILD: Pathways to a Pilot Program
Transition to Adulthood
Oxygen Management and Education
Not interested in a working group.
Please indicate if you available/interested in reviewing Patient Education, Program Materials, and/or funding proposal materials? Check all that apply
*
I am not available/interested.
Patient Education Review.
Program Review.
Review funding proposals.
Review non-English translations of clinical or educational materials for accuracy and appropriateness
Submit
Should be Empty: