May 15, 2019

Patient Study: LCA-10 And USH2

We are letting our community know about a patient experience study being conducted by Medicys Ltd., a medical research company that is looking for people with a confirmed diagnosis of Usher syndrome type 2A (USH2) or Leber congenital amaurosis 10 (LCA-10) to share their experiences living with a blinding eye disease.

At Fighting Blindness Canada (FBC), we support these sorts of patient experience studies because they provide extremely useful data points for developing treatments for blinding eye diseases. By understanding the lived experience of people with blinding eye diseases, organizations can better develop treatments that address the needs of the patient population.

The study involves a 15-minute questionnaire and a 60-minute interview. Participants will be asked about their first-hand experiences living with LCA-10 or USH2, including what led to the diagnosis, the challenges faced in living with the diagnosis, and the role that doctors have played in their journey. This study is also open to parents or caregivers of people living with LCA-10 or USH2.

Participants will receive a $80 honorarium for their time. All personal information will be kept strictly confidential in accordance with data protection laws, and conversations will be for research purposes only.

To learn more about this project and see if you might quality, please contact Alisha Hobson at 416.360.4200 x 235 or email ahobson@fightingblindness.ca. This study closes on May 22.