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Evaluation of the CE-CLE Carrier Screening Program

Has CE or CLE affected your family? Could it? The Cree Health Board’s CE-CLE Carrier Screening program deals with two genetic diseases, Cree Encephalitis (CE) and Cree Leukoencephalopathy (CLE).

The Eeyou Awaash Foundation, the Cree Health Board, and a research team from Sainte-Justine Hospital in Montreal, are partnering to evaluate this program to learn how well it is working for you and discover what improvements need to be made so that it serves you better.

The evaluation survey will ask people taking part in the program

  • How much they have learned about CE and CLE through the program;
  • How they feel about the program;
  • Whether their family has had any experience with CE-CLE.

People who participate in the evaluation will be asked to fill out three questionnaires: one before a session with the nurse, one after, and the third 6–12 months later. The questionnaires will be sent to the researchers, who will put them together with the survey responses from other participants.

Dates for each community:

Eastmain: January 22-23 
Whapmagoostui: January 29-30-31 
Ouje-Bougoumou: February 3-4 
Waswanipi: February 5-6-7 
Wemindji: February 18-19-20 
Chisasibi: March 3 to 7

The evaluation may also provide information that will help other Aboriginal groups who wish to set up similar programs.

If you are interested in participating in the evaluation survey or have any questions, you can contact:

Ms Valérie Gosselin
Cellphone: 819-855-5609
Email: Valerie.gosselin@ssss.gouv.qc.ca

The CE-CLE Screening Program is offered to adults in the Awash clinics and to Secondary 3-5 students in high schools. Participants are given an information session about these diseases, and then ask the program nurse any questions they have. If they wish, they can also ask for a blood test to see if they carry the genes for these diseases.