NCT05907109

Brief Summary

The objective of this randomized clinical trial is to test the effectiveness of a low-cost hybrid remotely monitored parent-mediated and clinic-based multidisciplinary early intervention (EI) for low-income infants with CHD in Brazil. The intervention protocols will be administered according to age modules, families will be monitored weekly. High risk infants also receive supplemental clinic-based interventions according to developmental needs. Controls will receive standard of care and access to early child development and nutrition practices information from the Brazilian Ministry of Health. All infants will be evaluated at within a 42-month follow-up research outpatient clinic, called NeuroCardio Baby at Santo Antonio Pediatric Hospital, of the Santa Casa de Misericordia Hospital Complex, and affiliated with The Cardiology Institute-University Foundation of Cardiology (IC-FUC), Porto Alegre, Brazil.

Trial Health

43
At Risk

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Trial has exceeded expected completion date
Enrollment
300

participants targeted

Target at P75+ for not_applicable

Timeline
Completed

Started Mar 2021

Longer than P75 for not_applicable

Geographic Reach
1 country

2 active sites

Status
unknown

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Start

First participant enrolled

March 16, 2021

Completed
2.2 years until next milestone

First Submitted

Initial submission to the registry

June 8, 2023

Completed
10 days until next milestone

First Posted

Study publicly available on registry

June 18, 2023

Completed
1.5 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

December 31, 2024

Completed
1 year until next milestone

Study Completion

Last participant's last visit for all outcomes

December 31, 2025

Completed
Last Updated

June 18, 2023

Status Verified

June 1, 2023

Enrollment Period

3.8 years

First QC Date

June 8, 2023

Last Update Submit

June 8, 2023

Conditions

Keywords

Congenital Heart DiseaseChild DevelopmentEarly InterventionTelemonitoringHome-based intervention

Outcome Measures

Primary Outcomes (1)

  • Compose the Neuropsychomotor profile of babies with CHD in multidisciplinary outpatient follow-up and compare to the group without follow-up.

    Compose the Neuropsychomotor profile of babies with CHD in multidisciplinary outpatient follow-up and compare to the group without follow-up using Bayley Scales of Infant and Toddler Development- Third Edition).

    From six months of age

Secondary Outcomes (1)

  • Neurodevelopment Scores in infant with CHD (Bayley Scales of Infant and Toddler Development- Third Edition)

    From six months of age

Study Arms (2)

Intervention

EXPERIMENTAL

Remotely monitored parent-mediated hybrid home and clinic based multidisciplinary Early Intervention protocols.

Behavioral: Remotely monitored parent-mediated hybrid home and clinic based multidisciplinary Early Intervention protocols.

Control Group - Standart of Care

NO INTERVENTION

* The control group receives basic guidelines on child development, nutrition, and breastfeeding provided by the Brazilian Ministry of Health, in addition to standard of care cardiac pediatric follow-up visits. * Infants will receive outcome developmental evaluations within a 42-month follow-up clinic.

Interventions

* Parents receive manualized protocols, instructional videos, and toy and material kits to administer EIs at home. * New modules are provided according to infant age or stage of intervention during the length of brief interventions or 12-months. * The families will be monitored by clinical researchers weekly. -High risk infants will receive supplemental EI services at the clinic according to developmental needs. * Infants will receive outcome evaluations within a 42-month follow-up clinic.

Intervention

Eligibility Criteria

AgeUp to 2 Months
Sexall
Healthy VolunteersNo
Age GroupsChild (0-17)

You may qualify if:

  • Pregnant women with a fetal diagnosis of CHD
  • Child up to two months diagnosed with CHD
  • Signature of the electronic free and informed consent form by those parents or legal guardians.

You may not qualify if:

  • Psychiatric or neurocognitive condition that prevents obtaining reliable clinical data (defined by the clinical judgment of the investigators)
  • Inability to read by parents or legal guardians.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (2)

Irmandade Santa Casa de Misericórdia de Porto Alegre

Porto Alegre, Rio Grande do Sul, 90035-190, Brazil

RECRUITING

Instituto de Cardiologia

Porto Alegre, Rio Grande do Sul, 90620-001., Brazil

RECRUITING

Related Publications (2)

  • Marino BS, Lipkin PH, Newburger JW, Peacock G, Gerdes M, Gaynor JW, Mussatto KA, Uzark K, Goldberg CS, Johnson WH Jr, Li J, Smith SE, Bellinger DC, Mahle WT; American Heart Association Congenital Heart Defects Committee, Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, and Stroke Council. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation. 2012 Aug 28;126(9):1143-72. doi: 10.1161/CIR.0b013e318265ee8a. Epub 2012 Jul 30.

  • Michelon RC, Lucchese-Lobato F. A remote parent-led early intervention protocol to promote motor development in infants with congenital heart disease: a feasibility pilot study of a randomized clinical trial. Dev Neurorehabil. 2024 Apr-May;27(3-4):134-144. doi: 10.1080/17518423.2024.2365796. Epub 2024 Jun 26.

Related Links

MeSH Terms

Conditions

Heart Defects, Congenital

Condition Hierarchy (Ancestors)

Cardiovascular AbnormalitiesCardiovascular DiseasesHeart DiseasesCongenital AbnormalitiesCongenital, Hereditary, and Neonatal Diseases and Abnormalities

Study Officials

  • Fernanda Lucchese-Lobato, PHD

    Instituto De Cardiologia/Fundação Universitária De Cardiologia

    PRINCIPAL INVESTIGATOR

Central Study Contacts

Fernanda Lucchese-Lobato, PHD

CONTACT

Study Design

Study Type
interventional
Phase
not applicable
Allocation
RANDOMIZED
Masking
SINGLE
Who Masked
OUTCOMES ASSESSOR
Masking Details
Assessors blinded to the allocation of participants
Purpose
TREATMENT
Intervention Model
PARALLEL
Model Details: Prospective Multicentric single-blinded, Two-arm Randomized Clinical Trial
Sponsor Type
OTHER
Responsible Party
PRINCIPAL INVESTIGATOR
PI Title
PHD

Study Record Dates

First Submitted

June 8, 2023

First Posted

June 18, 2023

Study Start

March 16, 2021

Primary Completion

December 31, 2024

Study Completion

December 31, 2025

Last Updated

June 18, 2023

Record last verified: 2023-06

Locations