TAPS RESEARCH OPPORTUNITY
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
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MEMBERS ONLY LOG IN
Multiples of America
Executive Office
2000 Mallory Lane
Suite 130-600
Franklin, TN 37067-8231
Email: info@MultiplesofAmerica.org