Effects of Developmental Support for Mothers of Infants With Spinal Muscular Atrophy
Summary
This ClinicalTrials.gov registry entry describes a mixed-methods study conducted at a university hospital's Pediatric Chest Diseases Outpatient Clinic, recruiting 13 mothers of infants aged 12–36 months with Spinal Muscular Atrophy (SMA) Type 1. Ten mothers will receive a 12-week online developmental support program (once weekly, 90 minutes per session), while three mothers will serve as controls receiving standard care. The study will evaluate infant developmental outcomes using the Ages and Stages Questionnaires (ASQ and ASQ-SE) and assess maternal developmental knowledge through the Caregiver Knowledge of Child Development Inventory (CKCDI).
“Ten mothers will be assigned to the intervention group, and three to the control group.”
About this source
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What changed
This ClinicalTrials.gov registry entry documents the launch of an interventional study (NCT07547189) examining developmental support for mothers of infants with SMA Type 1. The study uses a quasi-experimental design with 10 participants in an intervention group receiving weekly 90-minute online sessions over 12 weeks and 3 participants in a control group receiving standard care. Outcome measures include infant developmental progress (ASQ, ASQ-SE) and maternal knowledge of child development (CKCDI), with follow-up assessments at 4 weeks post-intervention.
Healthcare providers and clinical investigators involved in rare pediatric neurology or developmental care should note this registry entry as evidence of ongoing research into integrated maternal-infant support models for neurodegenerative conditions. The study's inclusion criteria (infants receiving pharmacological treatment without tracheostomy) may inform eligibility considerations for similar trials or clinical programs.
Archived snapshot
Apr 24, 2026GovPing captured this document from the original source. If the source has since changed or been removed, this is the text as it existed at that time.
Effects of Developmental Support for Mothers of Infants With Spinal Muscular Atrophy
N/A NCT07547189 Kind: NA Apr 23, 2026
Abstract
Spinal muscular atrophy (SMA) is an autosomal recessive neurodegenerative disorder causing progressive muscle weakness and atrophy. This mixed-methods study aims to provide developmental support to mothers of infants (aged 12-36 months) with SMA Type 1 and to evaluate its impact on infants' developmental outcomes and mothers' developmental knowledge.
Participants will include 13 mothers recruited via purposive sampling from a university hospital's Pediatric Chest Diseases Outpatient Clinic. Inclusion criteria require mothers to have infants with SMA Type 1 who are receiving pharmacological treatment and do not have a tracheostomy. Ten mothers will be assigned to the intervention group, and three to the control group.
Data will be gathered using quantitative and qualitative tools. Quantitative instruments include a General Information Form, the Ages and Stages Questionnaires (ASQ) and its Social-Emotional version (ASQ-SE) for developmental progress, and the researcher-adapted Caregiver Knowledge of Child Development Inventory (CKCDI). Qualitative data will be collected via "Parental reflections on developmental support" from the intervention group.
The intervention consists of a 12-week online developmental support program, held once weekly for 90 minutes. Post-test measurements will be administered to both groups immediately after the intervention, followed by a retention test for the intervention group four weeks later. Finally, prioritizing the children's best interes...
Conditions: Spinal Muscular Atrophy, Developmental Delay
Interventions: Online Early Intervention Program for Infants with SMA Type 1, Standard Care
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