NCT03666767

Brief Summary

This study is a multi-centre, international, prospective cohort study of congenital anomalies to compare outcomes between LMICs and high-income countries (HICs) globally.

Trial Health

87
On Track

Trial Health Score

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

Enrollment
3,850

participants targeted

Target at P75+ for all trials

Timeline
Completed

Started Oct 2018

Geographic Reach
1 country

1 active site

Status
completed

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

First Submitted

Initial submission to the registry

September 10, 2018

Completed
2 days until next milestone

First Posted

Study publicly available on registry

September 12, 2018

Completed
19 days until next milestone

Study Start

First participant enrolled

October 1, 2018

Completed
9 months until next milestone

Primary Completion

Last participant's last visit for primary outcome

June 30, 2019

Completed
7 months until next milestone

Study Completion

Last participant's last visit for all outcomes

February 9, 2020

Completed
Last Updated

February 24, 2020

Status Verified

February 1, 2020

Enrollment Period

9 months

First QC Date

September 10, 2018

Last Update Submit

February 21, 2020

Conditions

Outcome Measures

Primary Outcomes (1)

  • All-cause, in-hospital mortality

    This will include all patients in the study, both those who did not receive an intervention and those that did. For patient's hospitalised for over 30-days following primary intervention, a 30-day post-primary intervention mortality rate will be utilised. For patients who do not receive a primary intervention (conservative generic ward care only) but remain alive and hospitalised at 30-days following primary admission will have this time point used for recording their mortality status for the primary outcome.

    Mortality whilst in hospital during primary admission, up to a maximum of 30-days following primary intervention or 30-days following presentation for those who do not receive an intervention and are still in hospital.

Secondary Outcomes (11)

  • Surgical site-infection

    Occurring within 30-days of primary intervention

  • Wound dehiscence

    Occurring within 30-days of primary intervention

  • Need for re-intervention

    Occurring within 30-days of primary intervention

  • Condition specific complications

    Occurring within 30-days of primary intervention

  • Condition specific outcome variables

    Occurring within 30-days of primary intervention

  • +6 more secondary outcomes

Study Arms (7)

Oesophageal atresia (OA) +/- tracheo-oesophageal fistula (TOF)

Other: Comparisons will be made between LMICs and HICs

Congenital diaphragmatic hernia (CDH)

Other: Comparisons will be made between LMICs and HICs

Intestinal atresia (IA)

Other: Comparisons will be made between LMICs and HICs

Gastroschisis

Other: Comparisons will be made between LMICs and HICs

Exomphalos

Other: Comparisons will be made between LMICs and HICs

Anorectal malformation (ARM)

Other: Comparisons will be made between LMICs and HICs

Hirschsprung's disease

Other: Comparisons will be made between LMICs and HICs

Interventions

Countries will be defined as low, middle or high-income using the World Bank classification.

Anorectal malformation (ARM)Congenital diaphragmatic hernia (CDH)ExomphalosGastroschisisHirschsprung's diseaseIntestinal atresia (IA)Oesophageal atresia (OA) +/- tracheo-oesophageal fistula (TOF)

Eligibility Criteria

AgeUp to 16 Years
Sexall
Healthy VolunteersNo
Age GroupsChild (0-17)
Sampling MethodNon-Probability Sample
Study Population

Neonates, infants and children up to 16-years of age presenting for the first time with one of the seven congenital anomalies in the study to institutions in low-, middle- and high-income countries globally. All institutions that provide surgical care for the patients being studied can contribute data. Participating institutions will be recruited through convenience sampling with snowballing.

You may qualify if:

  • Any neonate, infant or child under the age of 16-years, presenting for the first time, with one of the study conditions can be included in the study.
  • Children who have NOT previously received any surgery for their condition.
  • Children who have received basic resuscitative and supportive care for their condition at a different healthcare facility and then been transferred to the study centre.
  • Patients presenting primarily with one of the study conditions who receive palliative care or no care must be included within the study to reflect true outcomes.

You may not qualify if:

  • Any neonate, infant or child with one of the study conditions who has previously received surgery (including a stoma) for their condition
  • If they have recently received surgery for their condition, were discharged and then represented with a complication of the surgery during the study period they should NOT be included in the study.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

King's College London

London, United Kingdom

Location

Related Publications (1)

  • Wright NJ; Global PaedSurg Research Collaboration. Management and outcomes of gastrointestinal congenital anomalies in low, middle and high income countries: protocol for a multicentre, international, prospective cohort study. BMJ Open. 2019 Sep 3;9(8):e030452. doi: 10.1136/bmjopen-2019-030452.

MeSH Terms

Conditions

Esophageal AtresiaHernias, Diaphragmatic, CongenitalIntestinal AtresiaGastroschisisHernia, UmbilicalAnorectal MalformationsHirschsprung Disease

Condition Hierarchy (Ancestors)

Digestive System AbnormalitiesDigestive System DiseasesEsophageal DiseasesGastrointestinal DiseasesCongenital AbnormalitiesCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesHernia, DiaphragmaticInternal HerniaHerniaPathological Conditions, AnatomicalPathological Conditions, Signs and SymptomsIntestinal DiseasesMusculoskeletal AbnormalitiesMusculoskeletal DiseasesHernia, AbdominalInfant, Newborn, DiseasesHernia, VentralMegacolonColonic Diseases

Study Officials

  • Naomi J Wright, MBChB BSc MRCS DCH MSc

    King's College London

    PRINCIPAL INVESTIGATOR

Study Design

Study Type
observational
Observational Model
COHORT
Time Perspective
PROSPECTIVE
Sponsor Type
OTHER
Responsible Party
PRINCIPAL INVESTIGATOR
PI Title
Miss Naomi Wright

Study Record Dates

First Submitted

September 10, 2018

First Posted

September 12, 2018

Study Start

October 1, 2018

Primary Completion

June 30, 2019

Study Completion

February 9, 2020

Last Updated

February 24, 2020

Record last verified: 2020-02

Data Sharing

IPD Sharing
Will share

Following publication of the main study results, the full anonymised dataset will be shared with all collaborators and made publicly available. At no time during presentation or publication of the study will individual collaborators, institutions or countries be independently identifiable. For the main study publication, all data within low, middle and high-income countries will be pooled for analysis. Following publication of the main study, collaborators from within a country can undertake a sub-analysis of the data from their country, but only if all collaborators who have contributed data from that country agree. Individual country names will not be identifiable on the dataset made publicly available - each country will be represented by a random number. The publicly available anonymised data will be identifiable by continent allowing for continental sub-analyses to be undertaken.

Shared Documents
STUDY PROTOCOL
Time Frame
Following publication of the main results.

Locations