Interview with Carolina Jimenez
What’s your largest study right now?
I’m leading a national team that’s making the first attempt of its kind to collect prospective data on autoimmune hepatitis across Canada. Autoimmune hepatitis is liver disease that occurs when the body’s immune system attacks the cells of the liver.
What makes this so exciting?
This project is unique because it’s aimed to gather information in a retrospective way. We’re collecting data from tertiary care centres across Canada over a 10 year period. After we collate the data we can analyze it however we like. For example, we want to know the average age, gender, how long it took between when a child first presented with symptoms and when the diagnosis was made.
Why is data collection so important?
Because there are not many large pediatric studies available about how to deal with autoimmune hepatitis. To date, most research in this area points to adult populations and only single center reports.
What types of information do you want to track?
Because this involves an autoimmune related problem, there are certain serum markers—blood work that we follow so we can classify the type of disease. This disease has two types and depending on the type patients may respond better to treatment or may have fewer complications. That’s the kind of thing that we want to better understand as well as track how patients progress over time; how many patients needed a transplant; what kind of treatments they used and dosages; and so on. Bottom line, we’re looking for better outcomes for kids.
Have you made any early discoveries with the data?
It’s a descriptive study. It’s not like we’re going to “discover” something, but for example it is interesting that one of the things we’ve learned is that not everyone in Canada treats children the same way. So,with these analyses we could promote standard treatment based on better outcomes.
Does CHEO own the content database?
Yes, but any site that contributed their data also has access privileges so they can analyze the data in their own way. I’m always thinking of new and unique ways to partner with my colleagues in Canada and internationally also.
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