Search reports, ask a question, or jump to a page.
The problem
Intervention: Proactive developmental assessments and multidisciplinary team support for medical and developmental care
Who it was tested with: 193 people with congenital hyperinsulinism from 34 countries, mean age 12.52 years at follow-up.
Experience from people who deliver programmes: stories, case studies and lessons learned. Valuable for understanding how and why, and for spotting what to test next, but not a measure of effect.
"The aim of this study was to describe the neurodevelopmental outcomes of a heterogenous cohort of individuals with HI directly from the perspective of the person with HI or their family, as shared through the HI Global Registry." The study documents the prevalence and nature of neurodevelopmental challenges but does not test whether the proposed multidisciplinary interventions reduce these outcomes.
Study is descriptive and does not evaluate the effectiveness of the recommended interventions; relies on self-reported outcomes rather than objective clinical assessments; cross-sectional design prevents causal inference; no comparison group or control condition
Across countries and designs
1 study · 0 countries
