Allied Cleft & Craniofacial Quality-Improvement and Research Network (ACCQUIREnet)

NCT ID: NCT02702869

Last Updated: 2026-01-07

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

ENROLLING_BY_INVITATION

Total Enrollment

1000 participants

Study Classification

OBSERVATIONAL

Study Start Date

2016-10-31

Study Completion Date

2031-12-31

Brief Summary

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The Allied Cleft \& Craniofacial Quality-Improvement and Research Network (ACCQUIREnet) is a group of multidisciplinary cleft teams that have implemented a system for prospective collection of outcomes data, based on the ICHOM Standard Set for the Comprehensive Appraisal of Cleft Care, CLEFT-Q, and other outcomes instruments. Participating cleft teams may analyze clinical and psychosocial outcomes related to care of the child with cleft lip and/or palate (CL/P), compare its performance with those of other cleft centers, and identify opportunities for quality improvement.

Detailed Description

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The purpose of this project is to implement a system of prospective, standardized data collection for all patients with cleft lip and/or palate (CL/P) treated by the cleft and craniofacial centers that participate in ACCQUIREnet.

Adoption of this prospective data-collection system has two principal goals:

1. To enable on-demand and scheduled review of cleft-care-related safety and outcomes data and team performance for the purpose of internal audits and continuous quality improvement; and
2. To permit participation in multi-site, collaborative quality-improvement projects and/or research networks that require usage of these standardized data-collection methods. (These collaborations are described in corresponding IRB protocols and data-transfer agreements. Patient privacy and confidentiality is protected at all times.)

All patients with CL/P treated at cleft and craniofacial centers participating in ACCQUIREnet will be invited to participate in this project. Duke University serves as the coordinating center and statistical support center for the study. Data are maintained in a local, secured database.

The IRB protocol details methods of quality assurance, data monitoring, and auditing. Data dictionaries employed in ACCQUIREnet include the CleftCap REDCap project template, CleftKit Common Data Model (an extension of the PCORnet Common Data Model), the ICHOM Standard Set for the Comprehensive Appraisal of Cleft Care, and the CLEFT-Q patient-reported outcome manual, maintained by the International Consortium for Health Outcomes Measurement (ichom.org) and McMaster University, respectively.

Conditions

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Cleft Lip Cleft Palate Cleft Lip and Palate

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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uCL(A)

Children with unilateral cleft lip with/without cleft alveolus but intact secondary palate. Subgroup analysis by severity of lip (complete, incomplete, or lesser-form).

cleft lip repair

Intervention Type PROCEDURE

gingivoperiosteoplasty

Intervention Type PROCEDURE

LeFort-1 maxillary repositioning

Intervention Type PROCEDURE

rhinoplasty

Intervention Type PROCEDURE

speech therapy

Intervention Type OTHER

orthodontia

Intervention Type PROCEDURE

presurgical orthopedics

Intervention Type PROCEDURE

uCL(A)P

Children with unilateral cleft lip with/without cleft alveolus and with cleft secondary palate. Subgroup analysis by severity of lip (complete, incomplete, or lesser-form) and severity of palate (submucous, Veau-I, Veau-II, or Veau-III).

cleft lip repair

Intervention Type PROCEDURE

cleft palate repair

Intervention Type PROCEDURE

oronasal fistula repair

Intervention Type PROCEDURE

pharyngoplasty

Intervention Type PROCEDURE

gingivoperiosteoplasty

Intervention Type PROCEDURE

LeFort-1 maxillary repositioning

Intervention Type PROCEDURE

rhinoplasty

Intervention Type PROCEDURE

myringotomy and tympanostomy tube placement

Intervention Type PROCEDURE

speech therapy

Intervention Type OTHER

orthodontia

Intervention Type PROCEDURE

presurgical orthopedics

Intervention Type PROCEDURE

sound amplification for hearing

Intervention Type DEVICE

bCL(A)

Children with bilateral cleft lip with/without cleft alveolus but intact secondary palate. Subgroup analysis by severity of lip (complete, incomplete, or lesser-form).

cleft lip repair

Intervention Type PROCEDURE

gingivoperiosteoplasty

Intervention Type PROCEDURE

LeFort-1 maxillary repositioning

Intervention Type PROCEDURE

rhinoplasty

Intervention Type PROCEDURE

speech therapy

Intervention Type OTHER

orthodontia

Intervention Type PROCEDURE

presurgical orthopedics

Intervention Type PROCEDURE

bCL(A)P

Children with unilateral cleft lip with/without cleft alveolus and with cleft secondary palate. Subgroup analysis by severity of lip (complete, incomplete, or lesser-form) and severity of palate (submucous, Veau-I, Veau-II, Veau-III, or Veau-IV).

cleft lip repair

Intervention Type PROCEDURE

cleft palate repair

Intervention Type PROCEDURE

oronasal fistula repair

Intervention Type PROCEDURE

pharyngoplasty

Intervention Type PROCEDURE

gingivoperiosteoplasty

Intervention Type PROCEDURE

LeFort-1 maxillary repositioning

Intervention Type PROCEDURE

rhinoplasty

Intervention Type PROCEDURE

myringotomy and tympanostomy tube placement

Intervention Type PROCEDURE

speech therapy

Intervention Type OTHER

orthodontia

Intervention Type PROCEDURE

presurgical orthopedics

Intervention Type PROCEDURE

sound amplification for hearing

Intervention Type DEVICE

CP

Children with cleft secondary palate only, but intact lip and alveolus. Subgroup analysis by severity (submucous, Veau-I, or Veau-II).

cleft palate repair

Intervention Type PROCEDURE

oronasal fistula repair

Intervention Type PROCEDURE

pharyngoplasty

Intervention Type PROCEDURE

LeFort-1 maxillary repositioning

Intervention Type PROCEDURE

myringotomy and tympanostomy tube placement

Intervention Type PROCEDURE

speech therapy

Intervention Type OTHER

sound amplification for hearing

Intervention Type DEVICE

Interventions

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cleft lip repair

Intervention Type PROCEDURE

cleft palate repair

Intervention Type PROCEDURE

oronasal fistula repair

Intervention Type PROCEDURE

pharyngoplasty

Intervention Type PROCEDURE

gingivoperiosteoplasty

Intervention Type PROCEDURE

LeFort-1 maxillary repositioning

Intervention Type PROCEDURE

rhinoplasty

Intervention Type PROCEDURE

myringotomy and tympanostomy tube placement

Intervention Type PROCEDURE

speech therapy

Intervention Type OTHER

orthodontia

Intervention Type PROCEDURE

presurgical orthopedics

Intervention Type PROCEDURE

sound amplification for hearing

Intervention Type DEVICE

Other Intervention Names

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cheiloplasty palatoplasty sphincteroplasty orthognathic surgery nasoalveolar molding dentofacial orthopedics Georgiade-Latham appliance Latham appliance hearing aid

Eligibility Criteria

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Inclusion Criteria

* Typical orofacial clefts, of which subtypes are:
* Unilateral or bilateral cleft lip
* Unilateral or bilateral cleft lip and alveolus
* Unilateral or bilateral cleft lip and alveolus and palate
* Unilateral or bilateral cleft lip and palate
* Overt cleft palate
* Occult cleft palate

Exclusion Criteria

* Atypical (Tessier) facial clefts
Minimum Eligible Age

1 Day

Maximum Eligible Age

22 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Duke University

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Alexander C Allori, MD, MPH

Role: PRINCIPAL_INVESTIGATOR

Duke University

Locations

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University of Florida - Shands Hospital

Gainesville, Florida, United States

Site Status

Joe DiMaggio Children's Hospital

Hollywood, Florida, United States

Site Status

Orlando Health - Arnold Palmer Hospital for Children

Orlando, Florida, United States

Site Status

Johns Hopkins - All Children's Hospital (JHACH)

St. Petersburg, Florida, United States

Site Status

Maine Medical Center

Portland, Maine, United States

Site Status

Harvard University - Boston Children's Hospital (BCH)

Boston, Massachusetts, United States

Site Status

Washington University - St. Louis Children's Hospital (WUSTL)

St Louis, Missouri, United States

Site Status

Duke University - Duke Children's Hospital & Health Center

Durham, North Carolina, United States

Site Status

Wake Forest University - Brenner Children's Hospital

Winston-Salem, North Carolina, United States

Site Status

University of Texas at Houston - Children's Memorial Hermann Hospital

Houston, Texas, United States

Site Status

Dalhousie University - IWK Health Centre

Halifax, Nova Scotia, Canada

Site Status

Countries

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United States Canada

Related Links

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http://www.ichom.org/medical-conditions/cleft-lip-palate/

Official web site for ICHOM Standard Set for cleft lip and/or palate, upon which the Duke project is based

http://accquire.net

ACCQUIREnet web site

Other Identifiers

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Pro00104806

Identifier Type: -

Identifier Source: org_study_id

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