Introduction:
BC-CONNECT-HD has been developed in response to compelling research findings regarding the frequency of HD in British Columbia.
What we found:
Approximately 1 in 7,000 or 630 total, British Columbians were affected with HD in 2012. This does not include those individuals carrying the gene associated with HD but who were not experiencing disease symptoms.
In 2012, there were approximately 1 in 1,000 or 4,000 total, British Columbians at 25-50% risk for developing HD.
In Context:
The most recent determination of HD frequency in Canada occurred over 30 years ago in the Prairie provinces and estimated HD to be half as prevalent as our study reveals.
Application:
These findings have highlighted inequalities in access to HD resources in this province. BC-CONNECT-HD aims to directly address these inequalities and address HD service needs for everyone in British Columbia.
What we Need:
In order to continue to justify the allocation of resources to providing necessary care, we must continue to account for your presence in BC. Your demographic information (age, city of residence, ethnicity) will be maintained for these purposes.
WHAT:Structure:
BC-CONNECT-HD is a highly secure, well-protected, electronic platform.
Your information will be accessible only to your multi-disciplinary care team at the Centre for Huntington Disease.
Function:
The multi-disciplinary care team at the CHD would like everyone in BC to benefit from our specialized HD-centred services. When you join BC-CONNECT-HD, you will receive the following (by mail or email):
Social Services:
– life quality improvement information
– housing and financial information
– education and opportunities
Health Care:
– health care recommendations based on leading edge research
Opportunities:
– options for taking part in clinical research trials
Other services:
– updates regarding gene testing and counseling
For more information please contact:
Please follow link to view publication stemming from graduate work of Emily Fisher on the prevalence of HD in BC.
Fisher ER and Hayden MR. Multi-source ascertainment of Huntington disease in Canada: prevalence and population at risk. Mov Disord. 2013. Oct 21. [Epub ahead of print]. PMID: 24151181.
