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Does the registry speak your language? A case study of the Global Angelman Syndrome Registry

Authors :
Megan Tones
Nikolajs Zeps
Yvette Wyborn
Adam Smith
Roberto A. Barrero
Helen Heussler
Meagan Cross
James McGree
Matthew Bellgard
Source :
Orphanet Journal of Rare Diseases, Vol 18, Iss 1, Pp 1-10 (2023)
Publication Year :
2023
Publisher :
BMC, 2023.

Abstract

Abstract Global disease registries are critical to capturing common patient related information on rare illnesses, allowing patients and their families to provide information about their condition in a safe, accessible, and engaging manner that enables researchers to undertake critical research aimed at improving outcomes. Typically, English is the default language of choice for these global digital health platforms. Unfortunately, language barriers can significantly inhibit participation from non-English speaking participants. In addition, there is potential for compromises in data quality and completeness. In contrast, multinational commercial entities provide access to their websites in the local language of the country they are operating in, and often provide multiple options reflecting ethnic diversity. This paper presents a case study of how the Global Angelman Syndrome Registry (GASR) has used a novel approach to enable multiple language translations for its website. Using a “semi-automated language translation” approach, the GASR, which was originally launched in English in September 2016, is now available in several other languages. In 2020, the GASR adopted a novel approach using crowd-sourcing and machine translation tools leading to the availability of the GASR in Spanish, Traditional Chinese, Italian, and Hindi. As a result, enrolments increased by 124% percent for Spain, 67% percent for Latin America, 46% percent for Asia, 24% for Italy, and 43% for India. We describe our approach here, which we believe presents an opportunity for cost-effective and timely translations responsive to changes to the registry and helps build and maintain engagement with global disease communities.

Details

Language :
English
ISSN :
17501172 and 87606860
Volume :
18
Issue :
1
Database :
Directory of Open Access Journals
Journal :
Orphanet Journal of Rare Diseases
Publication Type :
Academic Journal
Accession number :
edsdoj.92fdfc6d243464b87606860c61c2fba
Document Type :
article
Full Text :
https://doi.org/10.1186/s13023-023-02904-1