Guidance to develop a multidisciplinary, international, pediatric registry: a systematic review.

ABSTRACT:

Aim

The European Reference Network for craniofacial anomalies and ear, nose and throat disorders (ERN-CRANIO) aims to improve craniofacial care on a European scale. Within ERN-CRANIO, the cleft lip and palate (CL/P) work stream seeks to ameliorate health outcomes for patients with CL/P. This work stream acknowledged the need for a European wide registry for comparable outcome measures and therapy endpoints to achieve this goal. This review aimed to provide a scientific basis for the conceptualization of this registry by studying previous registry initiatives.

Methods

This review performed thematic analysis on twenty-four articles through narrative synthesis. An iterative process was used to identify key-themes required for prolonged registry success.

Results

Analysis

SUBMITTER: Ombashi S 

PROVIDER: S-EPMC10512647 | biostudies-literature | 2023 Sep

REPOSITORIES: biostudies-literature