Aim To describe the implementation of a public involvement strategy based on the UK Standards for Public Involvement in Research within the Brazilian Cerebral Palsy Register (BrCPR).Method We conducted a participatory, exploratory, sequential, mixed-methods study. Eleven partners (five adults with cerebral palsy and six mothers) from different Brazilian states participated in a four-phase online process: partner integration; knowledge building; exploring public involvement standards and identifying barriers and facilitators; and action plan development and co-creation of an implementation process of a public involvement group.Results Partners selected WhatsApp as their primary communication method and were satisfied with meeting the dynamics and content, except meeting duration (1 hour 30 minutes). Reported barriers included language inaccessibility, researcher attitudes, limited family empowerment, time constraints, and lack of researcher flexibility. Facilitators included researcher flexibility, varied knowledge-sharing formats, plain language use, qualitative impact measures, governance council creation, and revised public involvement implementation steps. Partners proposed a seventh standard: continuous review (of standards, co-responsibility, and research aspects). A 26-action implementation plan and a 6-stage public involvement implementation model for cerebral palsy registries were co-created.Interpretation The UK Standards for Public Involvement in Research proved an adequate guide for the BrCPR public involvement group. Identified barriers and facilitators guided group actions, leading to a public involvement implementation process grounded in partners' needs and perspectives.
Abstract Aim To identify trajectories of normal fidgety movements between 10 weeks and 20 weeks corrected age and determine the optimal timing of the General Movement Assessment (GMA) to improve early cerebral palsy detection. Method In this prospective multicenter cohort study, parents submitted up to six serial home videos (median five per infant) between 10 weeks and 20 weeks corrected age using the Baby Moves smartphone application. GMA was performed by certified raters masked to age and clinical history. Group‐based trajectory modelling identified patterns of normal fidgety movement expression over time. Results A total of 438 infants (233 males, 205 females) contributed 2075 videos. Four trajectories were identified: consistent fidgety (22%), later fade (63%), later onset (10%), and low prevalence (5%). The greatest overlap in normal fidgety movements occurred at 14 to 15 +6 weeks corrected age. Approximately 10% of infants (later onset) demonstrated emergence of normal fidgety movements after the currently recommended initial assessment window. The low prevalence trajectory was associated with lower gestational age and greater neonatal morbidity. Interpretation Timing influences fidgety movement classification and may affect early cerebral palsy detection. Assessment at 14 to 15 +6 weeks corrected age may reduce early misclassification.
Abstract The presence of a small optic disc on funduscopy is prerequisite for the diagnosis of optic nerve hypoplasia (ONH). Visual acuity may be normal. However, amblyopia can occur in ONH. A relative afferent pupillary light defect indicates unilateral or asymmetrical ONH. Septo‐optic‐pituitary dysplasia (SOD) is diagnosed when ONH is associated with midline defects (e.g. hypopituitarism, small pituitary gland size, absent septum pellucidum, or abnormal corpus callosum). Olfactory bulbs/tracts agenesis or hypoplasia may occur with loss of smell. Pituitary function, neurological comorbidities (e.g. epilepsy, cerebral palsy), and psychiatric comorbidities (e.g. mood or anxiety disorders) should be evaluated regularly in patients with ONH/SOD. The risk of hypopituitarism continues until pubertal completion. Autopsy studies suggest that SOD is a clinical and not a neuropathological diagnosis. Children and especially infants/toddlers with SOD are at higher risk of acute hospital admissions and death than children without ONH/SOD. Respiratory tract illnesses are a common reason for their admission and is a frequent cause of their death. Healthcare professionals should be familiar with the comorbidities and complications associated with ONH/SOD, since they can be managed to reduce the mortality risk.
