TITLE OF STUDY: “Parent Experiences and Perspectives on Hearing Loss in Monochorionic Twins with Twin Anemia Polycythemia Sequence: A Cross-Sectional Survey.” (Formal name: LOSS-TAPS)

INVESTIGATOR: The TAPS Support Foundation

PRINCIPLE INVESTIGATORS: The TAPS Support Foundation; Stephanie Ernst, Founder

PARTICIPANTS NEEDED: Parents and caregivers of children with a diagnosis of Twin Anemia Polycythemia Sequence (TAPS) and hearing loss

LOCATION: Anywhere in the world

PURPOSE OF STUDY: To create a scientific communication around parental perspectives concerning hearing loss in TAPS children, and to develop important resources for parents and professionals, including information sheets. It will also help us to shape future research questions in this area.

METHOD OF INVESTIGATION: Online Survey

SPONSORING INSTITUTION: LUMC in Leiden, the Netherlands

INITIATION DATE: December 12, 2025

COMPLETION DATE: February 12, 2026

CLICK THIS LINK TO AN INFORMAL AND ANONYMOUS GOOGLE FORM TO JOIN IN THE STUDY:
https://www.tapssupport.com/parent-perspectives-on-hearing-loss/

QUESTIONS? EMAIL STEPHANIE ERNST: stephanie@tapssupport.com