Does the registry speak your language? A case study of the Global Angelman Syndrome Registry
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...
Source: Orphanet Journal of Rare Diseases - Category: Internal Medicine Authors: Megan Tones, Nikolajs Zeps, Yvette Wyborn, Adam Smith, Roberto A. Barrero, Helen Heussler, Meagan Cross, James McGree and Matthew Bellgard Tags: Letter to the Editor Source Type: research