Enhanced participant engagement observed in the Angelman patient data registry due to translation efforts
The Global Angelman Syndrome Registry (GASR), an invaluable platform for collecting patient data about the rare neurological disease, has undergone a significant transformation. In 2022, the GASR website became available in Spanish, traditional Chinese, Italian, and Hindi, marking a significant step towards inclusivity and engagement with global disease communities.
The GASR, launched in 2016 under the sponsorship of the Foundation for Angelman Syndrome Therapeutics Australia, contains a series of online modules that Angelman caregivers can complete to submit data about patient demographics, clinical presentation, and treatments. The website was initially available only in English, but later adopted tools to be accessible in other languages.
To ensure the translated content was user-friendly and accurate, professionals from the Angelman community were enlisted as proofreaders. A semi-automated approach was used to generate the translations, with more work needed to validate them, according to the researchers. A preliminary validation study was conducted on the "Newborn and Infancy" module of the GASR, comparing English and Spanish responses, which showed generally consistent results, confirming the validity of the translated content.
The translation of the GASR website has substantially boosted global participation by families affected by Angelman syndrome. Enrollment increased by 124% in Spain, 67% in Latin America, 46% in Asia, 43% in India, and 24% in Italy after the translations became available.
The researchers noted it wasn't always easy to source proofreaders for certain languages since registry participation was very low in some regions. However, they hope this approach could serve as an example for other rare disease registries. The study, "Does the registry speak your language? A case study of the Global Angelman Syndrome Registry," was published in the Orphanet Journal of Rare Diseases.
The GASR website is intended to help recruit for clinical trials and develop new therapies. Adopting multiple languages on the GASR website is crucial in overcoming the barrier posed by English being the default language for global disease registries, which can deter families who speak other languages from participating. The researchers continue to work on validating the translations and expanding the GASR's reach to more languages.
