The University College of the Fraser Valley (UCFV) and the Fraser Valley Child Development Centre (FVCDC), are conducting a study entitled "Toward Exercise Intervention for Children with FASD: a Strength-Based Approach". The purpose of the study is to develop and evaluate a strength-based motor skill program for children who have either been diagnosed with Fetal Alcohol Syndrome or other conditions that fall under the umbrella term of Fetal Alcohol Spectrum Disorder (FASD). This program is unique because it focuses on the child’s strengths, rather than their weaknesses. Research suggests that motor skills, and in particular gross motor skills, are an area of relative strength in children and youth with FASD. Thus the program will develop and enhance those motor strengths.

Appropriately, we have coined the name "FAST Club" for our project. Improved motor skills may result in increased success in physical activities and increase the ability of children with FASD to lead physically active lifestyles. Increased levels of physical activity are associated with reduced risk of chronic disease and a variety of psychological benefits.

The program consists of 2 sessions per week for 8 weeks (total of 16 sessions). During each session, the children will engage in a physical activity/motor skills program under the supervision of Occupational Therapists from the FVCDC. Each child will be matched one on one with a UCFV Kinesiology student instructor who will work directly with that child throughout the program. The Kinesiology students will be employed by UCFV and will have undergone criminal record checks. The program is being conducted in the gymnasium of Jackson Elementary School in Abbotsford (33165 King Road) and is held on Tuesdays and Fridays from 3:30 - 5:00 pm from October - December 2008. This program is free of charge. We will also assist with any transport required to bring children to the program (e.g. costs covered for accompanied taxi service).

The activities in the initial assessment of motor abilities and those that will be incorporated into the children's individual activity programs are not activities associated with high risk of injury and will not involve risk above that encountered by the children in other aspects of their everyday lives (eg. during school gym class or at play). As with the performance of any activity, there is a small risk of minor injury or physical discomfort. The Occupational Therapists and Kinesiology faculty will ensure that all possible precautions are taken to reduce risk of injury. Such precautions include one-on-one assistance from Kinesiology students during the program activities. The Kinesiology students will have received orientation on working with children with FASD and will have basic first aid training. The program is not expected to result in any emotional discomfort for any children. Students have also been instructed not to discuss the children's diagnoses with the children or others.

Evaluation of the program's effectiveness will involve a number of tests and questionnaires that parents/caregiver and children will be asked to complete at 4 - 5 times throughout and after the program. Completion of the tests should take approximately 1.5 - 2 hours per time period and will be administered during the week prior to the 1st session and after the last session of the program, and at 2 times after completion of the program (at approximately 3 and 12 months) to assess long-term effects. These tests will involve assessment of the children's motor skill abilities, and ability to maintain attention and draw specific conclusions from general information (tests of brain function). In addition, there will be questionnaires that only the parents/caregiver will complete to assess their child's overall level of physical activity, and various aspects of their child's life skills and ability to function at home and school, as well as stress levels as a parent/caregiver. With parental permission, we would also like to ask the children's teacher at school to fill out similar questionnaires (if willing). In general, we want to assess the residual impact of participation in the "FAST Club" on children';s lives...how they behave at home and at school, whether or not there are positive cognitive effects, how this effects their families and levels of family stress and naturally, as this is a motor skill program, how this ultimately impacts each child's level of physical activity. The psychologist consulting on these tests is Dr. Brian Atkinson (Registered Psychologist). We also would like to collect saliva from each child to assess the level of cortisol, which is a stress hormone that can be affected by prenatal alcohol exposure. Collection of saliva is simple and can be done by you at home (see attached protocol).

Because this is a study, children participating will be randomly divided into 2 groups. One group will receive the program beginning in October, 2008, while the other group will begin the program in January, 2009. Parents/caregivers will not have a choice as to which group their child will be placed in. Regardless of which group each child is in, testing will begin in October, 2008 for all children. A detailed schedule will be provided.

It will be necessary for us to obtain each child’s medical records that contain the diagnosis that identifies them as an FASD affected child. These records will be obtained either from your child’s physician, or from the diagnostic centre that performed the diagnostic tests. To do this, parents/caregivers will be required to sign a Request for Medical Records form and will also be asked to sign a letter of consent. The child's medical records will be sent from the physician or diagnostic centre directly to Dr. Sterling Clarren, who is a Clinical Professor of Pediatrics at Children's and Women's Health Centre of British Columbia. Dr. Clarren will ensure that each child’s records are kept confidential.

Information obtained by the FVCDC, UCFV investigators, Dr. Clarren, or Dr. Atkinson will be kept in secure locations within the FVCDC, UCFV, Dr. Clarren, or Dr. Atkinson's office. This information will, however, be accessible to the other members of the research team. Information may be published in scientific journals or presented at scientific or professional meetings, but the identity of each child will be kept confidential. All information obtained during this study and which could be identified with a parent or child will be kept strictly confidential within the boundaries of the law. However, this confidentiality cannot be maintained if our research team becomes aware that any participant or other child is experiencing, or in danger of, abuse or neglect.

If you have any questions, please do not hesitate to ask. Feel free to contact Kirstie Glasgow at the FVCDC (604-852-2686), or the investigators at UCFV:

Ryan Konarski, BKin Project Coordinator University College of the Fraser Valley ryan.konarski@ucfv.ca 604-226-2266 Dr. Chris Bertram Department of Kinesiology and Physical Education University College of the Fraser Valley Chris.Bertram@ucfv.ca 604-504-7441 Ext. 4700

Alison Pritchard Orr, MSc. Alison.PritchardOrr@ucfv.ca 604-504-7441 Ext. 4755

Dr. Kathy Keiver Kathy.Keiver@ucfv.ca 604-504-7441 Ext. 4132

If you have any questions regarding your rights as a subject/participant in this study, please contact Yvon Dandurand, Associate Vice President of Research and Graduate Studies at UCFV at 604-864-4654.