The ALS Therapy Development Institute is seeking both people living with ALS and healthy volunteers to participate in a newly launched voice sampling program aimed at advancing research into ALS disease progression. The program uses a public phone to record people repeating the phrase: “I owe you a yo-yo today.” These recordings will be used as part of important ALS research.
Anyone above the age of 18 can participate. Participants will be asked to use the keypad on their phone to provide information including gender, age and whether or not they have been diagnosed by a doctor with ALS. That information and the recordings will be used as part of the Institute’s efforts to identify subtypes of ALS as well as potential new surrogate endpoints to accelerate ALS clinical trials.
Call 617-580-5436 to participate in this important effort.
Click on the below link for an example of the type of recording the Institute is seeking through this effort:
Participants are asked to speak in their normal cadence, meaning they should try to speak the phrase – "I owe you a yo-yo today” - five times as they would conversationally. The Institute aims to record 1,000 voice samples by the end of October 2016 to be used in this phase of the program. Analyses are conducted internally by scientists at the Institute and with their research collaborators in the Precision Medicine Program.
Based on initial findings, the program may be expanded or amended. However, since no personal or contact information is collected as part of this effort, we recommend that those interested in updates related to this project or calls for additional recordings subscribe to the Institute’s mailing list here: https://www.als.net/subscribe/
Information about the advancement of this project, including early data analysis, will be presented at the 12th annual Leadership Summit hosted by the Institute on October 28, 2016. More information about that event can be found at www.als.net/summit.
IMPORTANT NOTE: No personal identification information is collected through this effort. All recordings are treated as anonymous. Participants are not enrolling in a research study or clinical trial by participating in this one-time recording experiment.