Dr. Lowry reported to CSC that between 1993 and 2004, the Congenital Anomalies Surveillance System in Alberta has been the "gold standard" for other Provinces.  British Columbia is the only other Province to establish such a system of tracking.  During this period of time, both choanal atresia and coloboma were followed in Alberta.  Dr. Lowry says, "we have no reported cases in Alberta during these 11 years."

The Canadian Paediatric Surveillance system three year study, spearheaded by Dr. KD Blake also supported that there were no reported cases of CHARGE Syndrome in Alberta.

In 2005, the data base, now led by Dr. Blake at IWK in Halifax, has 9 reported cases of CHARGE Syndrome.  It is possible these reports also do not include the four families that CHARGE Syndrome Canada is aware of in Alberta. 

As you can see CSC president Cydne Park has been doing tremendous work in this Province over a short period of time.

Dr. Lowry states that, "CHARGE  association" is clearly a "syndrome".  Looking at the new criteria  and having doctors be made aware of the updated clinical features, makes us even more aware of the need to hear from individuals and families who have CHARGE syndrome in Alberta. Some may have moved into the Province from another area.  Dr. Lowry says, "It is important that we identify the population by at least statistics, to get a better handle on CHARGE in Alberta." 

Please contact CHARGE Syndrome Canada to find out how your child or an individual who has CHARGE syndrome in Alberta can be registered in the statistics of the Congenital Anomalies Surveillance System in Alberta.  As well, we need to make sure that you or your family are in the research data base at IWK.  CHARGE Syndrome Canada plays a large role in making network connections, so giving us even basic information will be important!  This can even be done anonomously.