Diagnostics
Research in Diagnostics
The team is engaged in research activities to help promote increased consistency, clarity and accuracy to the diagnosis of Fetal Alcohol Spectrum Disorder (FASD), and has several projects underway.
Facial Recognition
The facial features of FASD are only subtly unusual and can often be missed altogether by those who are not specifically trained to discern them. Although the features are only found in some individuals born with alcohol related difficulties, they are a powerful finding.
When the facial features of FASD are found they predict brain dysfunction and a history of prenatal alcohol exposure. One of the key features is a horizontal opening of the eye slits (palpebral fissures). Unfortunately, accurate norms for eye slit size in normal children, of all races in Canada, are not available. It is also suspected that the current norms, based primarily on US data, are inaccurate. This team is currently completing the largest population-based study of eye size ever undertaken. It is hoped that this team’s research results promote a more accurate standard for determining normal and abnormal eye slit size. This work can provide important benefits in future clinical screening programs and diagnostic clinics.
Measuring the Functional Aspects of Brain Dysfunction
There is little disagreement in Canada Northwest that capturing the cognitive and performance problems in those with FASD requires numerous standardized tests. These tests are usually given by psychologists, speech and language pathologists, occupational therapists, and then interpreted by the entire evaluation team lead by a physician (usually a pediatrician).
The Research in Diagnostics team has determined that the tests being used to make these determinations, while valid, are also highly variable from one clinic to the next. This makes it difficult to compare the outcomes from one program to the next or to develop a common description of the problems that affect the population as a whole. With that understanding, this team has lead a series of meetings bringing together professionals from programs across the region to develop a standard recommended list of tests to establish best clinical practices for FASD brain function assessment.
Collecting Common Information on Patients assessed for FASD
Clinical programs collect massive amounts of social, medical and psychological information on patients during the process of an evaluation for FASD. This information is often central to making a final diagnosis. But this information could also be used collectively to understand common problems within patient histories, the common needs for intervention, and many other things that could help systems be more responsive to the needs of a population diagnosed with FASD. Unfortunately, the information that is currently collected is organized in so many different ways that group analysis across programs is not possible. This team is leading a process to help facilitate the agreement for a common set of key questions. The answers to these questions would then be recorded in a consistent way so that the information could be analyzed, and then better recommendations could be made.
Refining the Diagnostic Terminology
Alcohol exposure during gestation leads to structural anomalies in the brain, which in turn cause functional disabilities. Both the structural damage and the functional problems vary in severity for each individual, and may not correlate with each other. (For example, those with the most obvious brain anomalies may not have the most obvious functional difficulties and the reverse). The FASD diagnostic community remains challenged in developing a consistent system of scoring or coding that would simplify but accurately capture the structural brain damage and the levels of functional disability. This would permit systems that care for patients - education, social service, criminal justice, mental health, etc. to readily understand the magnitude of the client’s problem. The Research in Diagnostics team is co-leading a National Canadian effort to develop an improved coding system that will allow for this communication.
Publications
Building Clinical Capacity for Fetal Alcohol Spectrum Disorder Diagnoses in Western and Northern Canada. Clarren, S. , Lutke, J.; Can J Clin Pharmacol Vol 15 (2) Summer 2008:e223-e237; June 10, 2008.
For more information contact Dr. Sterling Clarren, CEO and Scientific Director of CanFASD Northwest.
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