CRN Funds Dr. Trauner's Testers to Attend Netherlands Conference

The Cystinosis Research Network is pleased to announce that it has funded a special request from Dr. Doris Tranuer, neurologist at UCSD, for four of her testers to attend the international cystinosis meeting in the Netherlands at the end of this month.

The study is entitled "Cognitive Profiles in an International Sample of Individuals with Cystinosis" and represents a one time grant of $12,500. Excerpts from the grant are included below:

"We are requesting funds for travel and accommodations for testers from Dr. Trauner’s Pediatric Neurology Research Group to attend the International Cystinosis Conference in Amsterdam (June-July 2006) in order to collect cognitive data on international participants. The goal of this project is to test at least 20 international participants so that we may compare the cognitive profiles of our North American sample of cystinosis individuals with an international sample. Results will be combined with data collected in Italy in 2000 and will be written up for publication in a scientific journal...

...2. Hypothesis and Specific Aims

Cognitive testing on individuals with cystinosis in North America has shown a specific pattern of performance with better verbal than non-verbal skills. We plan to examine cognitive skills in an international group of individuals with cystinosis to determine whether this pattern is seen in individuals of other origins or is specific to our North American sample.

We currently have data on 5 international participants who were seen at the 2000 International Cystinosis Conference in Italy. It would be extremely valuable to collect additional data on an international sample so that formal analyses of the data can be conducted.

Based on our preliminary data from the Italy conference, it is hypothesized that the specific cognitive pattern seen in North American subjects is also present in the international sample. This suggests that the pattern is directly related to cystinosis rather than being a product of the “culture/environment” (e.g., differences in the educational system, treatment approaches, or cultural values)."

The CRN is pleased to continue to support Dr. Trauner's invaluable work. We will forward updates from this study as they become available.