DESIGN: To generate a core outcome set for patients dealing with cleft lip and/or palate within Malaysia, a combination of scholarly research reviews and consensus-driven methodologies, such as questionnaires and collaborative discussions, were utilized to guide the development process.
SETTING: Multicenter study. Feedback obtains via face-to-face and online interaction.
PARTICIPANTS: Cleft Clinicians, Cleft Lip and Palate Association of Malaysia members, hospitals, and government bodies personal.
MAIN OUTCOME MEASURE: Participants provide their feedback and suggestions of each outcome measure.
RESULTS: Through a deliberative process, agreement was established on a uniform set of outcome measures selected from an initial list of 108 potential outcomes. These agreed-upon measures were classified into 12 primary domains: demographic, cleft detail, pregnancy, general pediatric, otolaryngology/audiology, speech, surgical, orthodontics, pediatric dentistry, radiology, photographs, and study models.
CONCLUSION: A specialized core outcome set has been successfully developed for patients with cleft lip and/or palate, aiming to facilitate its implementation within the Malaysian healthcare system.
METHODS: The development of the database software involves several key stages, including determining the requirements, designing the software interface, implementing the system, conducting thorough testing, and completing comprehensive documentation. The database software was mainly developed internally within the research institution. The team involved in developing the clinical database includes cleft clinicians, software developers, software designers, members of the Cleft Lip and Palate Association Malaysia (CLAPAM), and experts in database development.
RESULTS: An online and offline database software has been developed to store information on patients with CL/P in Malaysia. It is designed to be user-friendly, accommodating multiple specialties and capable of storing photographs, radiology, and three-dimensional files. Various methods have been implemented to ensure data security. Additionally, documentation including video tutorials, consent forms, and hard copy versions has been developed to complement the database.
CONCLUSION: A specialized cleft-specific database software has been successfully developed for use in Malaysia to improve data management and support CL/P patient care.