<p>To establish and evaluate the feasibility of a state-level, multicentre digital registry for congenital hearing loss using a validated Hindi questionnaire to document pre-, peri-, and post-natal risk factors. Multicentric, descriptive, observational study in a state-level registry for congenital hearing loss, conducted between August 2022 and August 2024 across a nodal tertiary institution and six collaborating medical colleges (blinded for review). A total of 613 patients with severe-to-profound congenital hearing loss and absent functional speech were included. Patients with post-lingual acquired hearing loss were excluded. Data were collected using a validated Hindi questionnaire integrated into a secure web-based portal (URL blinded). Institutional administrators entered responses from caregiver interviews into structured drop-down menus. Records were encrypted, centrally monitored, and periodically reviewed for completeness and accuracy. Training sessions and nominal incentives encouraged uniform data collection. Ethical approval was obtained, and descriptive statistics were used to summarise feasibility indicators. A total of 613 patients were registered across seven centres, with over 95% complete and valid entries. All submissions were made through the digital portal, with no paper-based entries. Feasibility indicators demonstrated statewide adoption of the registry, with the nodal centre contributing the majority of cases, and peripheral centres providing smaller but consistent entries. The registry successfully captured socio-demographic characteristics, risk factors, developmental milestones, and treatment delay variables. The registry demonstrated the feasibility of digital, multicentre data collection for congenital hearing loss in the Indian context. It provides a scalable model for extension to other states and potential national adoption, thereby strengthening early hearing detection, neonatal screening, and hearing health policies.</p>

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Establishment of a State-Level Registry for Congenital Hearing Loss: Methodology, Feasibility, and Lessons from a Multicentre Pilot

  • Manu Malhotra,
  • Madhu Priya,
  • Abhishek Bhardwaj,
  • Vijay Singh,
  • Narendra Kumar,
  • Vetrivel G

摘要

To establish and evaluate the feasibility of a state-level, multicentre digital registry for congenital hearing loss using a validated Hindi questionnaire to document pre-, peri-, and post-natal risk factors. Multicentric, descriptive, observational study in a state-level registry for congenital hearing loss, conducted between August 2022 and August 2024 across a nodal tertiary institution and six collaborating medical colleges (blinded for review). A total of 613 patients with severe-to-profound congenital hearing loss and absent functional speech were included. Patients with post-lingual acquired hearing loss were excluded. Data were collected using a validated Hindi questionnaire integrated into a secure web-based portal (URL blinded). Institutional administrators entered responses from caregiver interviews into structured drop-down menus. Records were encrypted, centrally monitored, and periodically reviewed for completeness and accuracy. Training sessions and nominal incentives encouraged uniform data collection. Ethical approval was obtained, and descriptive statistics were used to summarise feasibility indicators. A total of 613 patients were registered across seven centres, with over 95% complete and valid entries. All submissions were made through the digital portal, with no paper-based entries. Feasibility indicators demonstrated statewide adoption of the registry, with the nodal centre contributing the majority of cases, and peripheral centres providing smaller but consistent entries. The registry successfully captured socio-demographic characteristics, risk factors, developmental milestones, and treatment delay variables. The registry demonstrated the feasibility of digital, multicentre data collection for congenital hearing loss in the Indian context. It provides a scalable model for extension to other states and potential national adoption, thereby strengthening early hearing detection, neonatal screening, and hearing health policies.