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Research Support & Monitoring

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The Association responds to requests to support research that will improve the quality of life for all individuals with spina bifida and/or hydrocephalus and their families. We work in partnership with the Hospital for Sick Children, the Bloorview MacMillan Centre, Easter Seal Society, McMaster Health Sciences Centre and other large research facilities by providing mailings, participation in focus groups and funding as appropriate.

The following are ongoing research initiatives on spina bifida and/or hydrocephalus:

VOLUNTEERS NEEDED for Child Participation Study

What will the researchers be doing?

As a participant in this study, the researchers will show your child pictures of children doing different activities and ask your child if they participate in the activities in the pictures. They will then ask your child why they participate in the activities they do, and why they do not participate in other activities.

When and where will it happen?

Your child’s participation will involve one session only. The entire session will take approximately 45 minutes. We will be completing the assessment in a location that is convenient to you and your family. The session will take place between January 2011 and June 2011.

If you have any questions about this study or if you and your child are interested in participating in this study please contact any member of the research team listed below.

Further information about the study will be provided at that time with no obligation of future participation in this study.

Adrianne Van Egmond, BA.
Student Occupational Therapist
Student Researcher a.vanegmond@utoronto.ca
Research Lab Phone: 416-946-7130

Katie Mah, BScN
Student Occupational Therapist
Student Researcher katie.mah@utoronto.ca
Research Lab Phone: 416-946-7130

Helene Polatajko, PhD, OT Reg. (Ont.), FCAOT, FCAHS
Co-Supervisor
Research Lab Phone: 416-946-7130

Jane Davis, MSc., OT Reg. (Ont.)
Co-Supervisor
Research Lab Phone: 416-946-7130

Participate in Motherisk Folic Acid Study

Would you like to be paid for taking a multivitamin?

The Motherisk Program, located at the Hospital for Sick Children, invites women between the ages of 18 and 45 years to participate in a study on folic acid during pregnancy.

We are looking for healthy women who are either planning a pregnancy or who are less than 6 weeks pregnant, but are not currently taking folic acid or multivitamins. In addition, women must not have had a previous pregnancy affected by a neural tube defect or a family history of neural tube defects.

Motherisk will provide multivitamins containing folic acid to all participants upon study inclusion and until 30 weeks of gestation. These multivitamins are to be taken daily. They are approved by Health Canada and can be safely obtained from healthcare professionals and healthcare services.

Researchers at the Hospital for Sick Children will draw blood samples at 4 times during the study to measure folate levels. Folate measurements will take place at the Hospital for Sick Children (Toronto, Ontario); therefore, study participation may be most convenient for women residing in the GTA.

Participants will be paid $250 (maximum) upon completion of the study. Payments may be adjusted depending on the degree of participation.

If you would like to participate or if you would like more information, please contact the study co-ordinator, Carolyn Tam, at 416-813-7283 or by carolyn.tam@utoronto.ca         

Participate in research into the quality of life of people with Normal Pressure Hydrocephalus

SB&H is proud to be supporting the research of Dr. Safraz Mohammed from St. Michael’s Hospital Division of Neurosurgery. He is working under the supervision of noted neurosurgeon, and adult hydrocephalus expert, Dr. Michael Cusimano. Dr. Mohammed and his research team are developing a comprehensive questionnaire to assess the quality of life of people with Normal Pressure Hydrocephalus (NPH). He is asking people with NPH to complete a survey to determine the best questions to include in the final questionnaire. We encourage you to complete the survey. The more who participate, the more reliable the questionnaire will be.

By completing this survey, you will be helping doctors understand the impact of hydrocephalus on a person’s life. They can use this information to tailor treatment to meet the specific needs of each person.

No identifying information will be collected. Your responses will be anonymous.

Before completing the survey online, we encourage you to read the research consent form. If you request a paper version of the survey, the consent form will be included.

Complete the Online Survey or contact SB&H at skean@sbhao.on.ca and we will send you the questionnaire on paper along with a postage-paid return envelope so you can return it at no cost to you.

Thank you for taking the time to complete the questionnaire.

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First World Congress on Spina Bifida Research and Care

This international event organized by the Spina Bifida Association in the United States brought together over 350 clinicians, medical professionals, and researchers in the area of spina bifida to discuss the future of care for this challenging and complex birth condition. The eight major disciplines involved in spina bifida care covered included developmental pediatrics, epidemiology genetics, neuropsychology, neurosurgery, nursing and allied health, orthopedics, transition and urology. The Congress was highlighted by breakout sessions in which the work of over 150 clinicians and scientists was presented.

Information about the First World Congress on Spina Bifida Research and Care, including abstracts for the majority of work presented, can be found on the event website .

Hydrocephalus Research-Promise & Innovation ( Exerpt from Current Magazine, Winter 2006 )

This overview written by Tina Popov, RNMN CNS/NP Division of Neurosurgery, Hospital for Sick Children in Toronto discusses Diversionary Procedures, Recent Innovations, Hydrocephalus Outcome Measures, and Normal Pressure Hydrocephalus Guidelines. Read more...
 

Progress Through Research ( Exerpt from Current Magazine, Spring 2006 )

This article written by Joe Giffels, the Spina Bifida Association of America's Research Director discusses recent research being undertaken on spina bifida in the United States. Read more...
 

The SANDI Project (Spina Bifida - Assessment of Neurobehavioral Development, International)

The SANDI Project is a collaborative effort between The Hospital for Sick Children in Toronto, the University of Texas - Health Science Center, Baylor College of Medicine, Hermann Hospital, Texas Children's Hospital and Shriners Children's Hospital. The project has two aims (1) to identify key outcomes (skills and abilities, academic and vocational achievement, behavioural and social adjustment) in children, adolescents, and adults with sb&h; (2) to relate differences in outcome to genetic patterns, medical history, brain development and social and educational environments.

The SANDI Project is looking for more participants. Those eligible are children and adults with spina bifida and hydrocephalus between 8-65 years.

Participate in this study

The SANDI Project: Unlocking the Mysteries of Spina Bifida and Hydrocephalus

Article by Dr. Maureen Dennis, Exerpt from Current Magazine, Fall-Winter 2002

"Children with spina bifida and hydrocephalus (SBH) have a distinctive pattern of cognitive ability that includes relatively good skills in using and understanding words, in rote memory; and in social awareness, but relatively poor skills in visual perception and eye-hand manipulation skills." Read more...
 

SANDI Project Research-"Spina Bifida & Hydrocephalus Research Update: Recent Studies of Gene, Brain, Behaviour and Adult Long-Term Outcomes"

Maureen Dennis, Ph.D. Senior Scientist and Co-Principal Investigator, SANDI Project presented an overview of recent research on spina bifida and hydrocephalus, September 30, 2006 at the SB&H Annual General Meeting.

The new studies of the genetic bases of spina bifida have identified populations who are at greater or lesser risk for neural tube defects. Studies also showed that the brain structure and behavioural function in individuals with spina bifida have identified characteristic features of brain development, as well delineating how the brain works successfully in performing tasks such as reading. The current research into adult outcomes has begun to identify particular challenges, such as memory, that face the young and middle-aged adults with spina bifida and hydrocephalus.

A copy of Dr. Dennis' presentation is available on CD-ROM through SB&H. If you would like a copy, please contact SB&H at 800-387-1575 or email us at provincial@sbhao.on.ca .

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The DANDI Project

Dandy Walker Syndrome and Aqueduct Stenosis: Neurobehavioral Developmental Assessment, International
The Dandy Walker and Aqueduct Stenosis Project is a collaborative effort between The Hospital for Sick Children in Toronto, the University of Texas - Health Science Center, Baylor College of Medicine, Hermann Hospital, Texas Children's Hospital and Shriners Children's Hospital. The project aims to identify factors - in the environment, as well as the brain - responsible for variations in the developmental outcomes of children with Dandy Walker Syndrome (DWS) or Aqueduct Stenosis (AS).

This project has been completed. Published findings from the study are currently not available.

Recent Progress in NTD Research ( Exerpt from Current Magazine )

"Duke University Medical Center (DUMC) has an ongoing, long-term research study aimed at discovering the genetic and environmental factors that cause neural tube defects (NTD's). This study is a highly collaborative effort involving 12 myelodysplasia clinics throughout the country."  Read more...

2005 Duke University Medical Center research update

Duke Center for Human Genetics website

Self-Esteem and Social Support: Strengthening the Social Relationships of Young People with Spina Bifida ( Exerpt from Current Magazine )

"The purpose of this research is to illuminate the nature of social support experienced by young people with spina bifida. Participants in the individual interviews had average levels of self-worth and higher than average levels of parental support, based on questionnaires completed 3 years ago in a study by [Dr. Beverley Antle, R.S.W.]" Read more...

Decline in Spina Bifida: Real or Imagined ( Exerpt from Current Magazine )

"The Bloorview MacMillan Children's Centre has been collecting information on children with spina bifida in a database for the last 20 years.

"Children are referred to the Bloorview MacMillan Children's Centre at a young age and are followed to adulthood. The database tracks these referrals and documents other demographic information. Investigation of the database has revealed that there has been an ongoing decline in baby referrals for the last 10 years." Read more...

From the Medical Journals ( Exerpt from Current Magazine )

A synopsis of current research from various medical journals compiled by the Queensland Australia Spina Bifida Association.

Research featured in Current Magazine

Spring 2006
Fall 2006
Winter 2007
Spring 2007
Fall 2007
Winter 2008
Summer 2008
Fall 2008
Winter 2009

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