Early Detection and Intervention Survey

Are there one or more designated leaders responsible for overseeing the ED care pathway between the NICU and follow-up clinics?

Is there a staff person assigned to manage the census of patients on the ED care pathway in the NICU?

Is there a structured process for ensuring continuity of care between NICU discharge and follow-up?

Do you have staff trained in General Movements Assessment (GMA) and Hammersmith Infant Neurological Examination (HINE)?

Do you have sufficient staffing to perform a term-equivalent age GMA on all patients on the ED care pathway?

Is there consistent collection and documentation of clinical assessment data, including GMA, HINE, MRI findings, and other relevant clinical findings?

Is your patient census managed through a local registry?

Does your hospital have an assigned person with quality improvement (QI) expertise dedicated to improving the ED pathway?

Do you have a high-risk infant follow-up, NICU follow-up, or neurology clinic with consistent staffing and training for GMA, HINE, and Test of Infant Motor Performance (TIMP) assessments?

Are there standardized early intervention programs or recommendations tailored for newborns with an early diagnosis of CP?

Is there a defined protocol for referring infants to early intervention services before formal diagnosis?

Does your institution provide family support and education on early identification and intervention?

Are there designated clinicians responsible for delivering a diagnosis of CP or high likelihood of CP?

Does your institution have longitudinal reporting on the average age of diagnosis for CP or high likelihood of CP?

Is this reporting stratified by clinical etiology (e.g., intraventricular hemorrhage [IVH], periventricular leukomalacia [PVL], hypoxic-ischemic encephalopathy [HIE])?

Does your NICU have criteria for initiating genetic testing in high-risk infants?

Is there programmatic support for the referral of outborn infants to your high-risk infant follow-up clinic for ED pathway evaluation?

Is a bioinformaticist or electronic medical record (EMR) analyst assigned to generate reports on your ED pathway metrics?

Does your institution utilize an electronic health record (EHR)-integrated system for tracking early developmental assessments and interventions?

Are key performance indicators (e.g., age of CP diagnosis, percentage of infants receiving early intervention referrals) routinely reviewed for quality improvement?

Does your institution participate in any national or regional collaboratives focused on early identification and intervention for high-risk infants?

Are there ongoing research or pilot initiatives aimed at enhancing early detection and intervention at your institution?

Does your institution provide training opportunities for staff on early detection and intervention best practices?

Is there dedicated funding or grant support for ED pathway implementation and sustainability?

Are there multidisciplinary team meetings that include neonatology, neurology, developmental pediatrics, therapy services, and social work to discuss high-risk infants?

Are families actively engaged in the ED pathway through structured education and support programs?