This letter received sent to the CRFC by the Centre of Genomics and Policy at McGill University invites those interested in participating in a research study to contact them. See details below. You can view the ads (referenced in the letter) on our Facebook Page.
Dear Sir/Madam from the Choroideremia Research Foundation,
we are writing you from the Center of Genomics and Policy (U. McGill, Montreal) to request your assistance in the recruitment of patients for our study “Preferences and the Value of Whole-Exome Sequencing as a Diagnostic Tool for Rare Diseases.” It is part of the CARE for RARE project, a pan-Canadian project promoting the use of a new genetic technology for diagnosing rare diseases.
The aim of our study is to explore and understand the perceptions and opinions of patients with rare diseases regarding the value of obtaining a diagnosis. Furthermore, we would like to understand the value of using technologies such as whole-exome sequencing (WES) in providing a clinical diagnosis for patients with rare diseases.
We are recruiting adults patients and parents of children with rare diseases for focus groups to be held in Calgary, Edmonton and Ottawa between February-April, and would greatly appreciate your help in sharing information about this study within your Choroideremia community.
Please find attached our ads for the study with our contact information. Please feel free to post the ads in your
association and on its website and social media pages, and share them with any other associations, clinics or professionals working with patients with other rare diseases.
This study and all ads have received ethics approval by the Universities of Calgary and McGill.
Please do not hesitate to contact us if you wish to have more information.
We thank you for your attention and help.
Daphne Esquivel Sada
Centre of Genomics and Policy