First-ever comprehensive Fetal Alcohol Spectrum Disorder database developed by CanFASD
(July 3, 2018) The Canada Fetal Alcohol Spectrum Disorder Research Network (CanFASD) is launching the only comprehensive Fetal Alcohol Spectrum Disorder (FASD) database in the world, providing key insight into the profile of individuals with FASD as well as Canada’s first-ever national prevalence statistics.
CanFASD can now get real-time data from clinics across Canada, helping inform policy and practice at a national level. Information from the database will also provide data back to each of the diagnostic clinics to help them inform and support their own work.
The database will also provide opportunities for national education and training to improve services for individuals with this neurodevelopmental disorder.
CanFASD’s national database is important for understanding the relationship between diagnostic capacity and service availability for individuals with FASD. In-depth research will inform policy decision and resource allocations pertaining to health services provided to those with FASD. Currently, there are more than 25 clinics from nine provinces and territories participating.
Audrey McFarlane, Executive Director, CanFASD
Canada does not have its own prevalence number. We have been extrapolating from American studies and small regional or provincial studies to estimate Canadian prevalence rates of FASD. It’s a complex disorder to diagnose because it’s not as simple as one test – FASD is a different experience for each person affected. This database will not only provide data on prevalence, but it will provide important implications when developing services and policies.
Kathy Unsworth, Managing Director, CanFASD
Collection of standardized data on children assessed for neurodevelopmental disorders across the country will provide evidence related to prevalence, risk factors, interventions and short and long-term outcomes. Comparisons in diagnoses made per capita and variations or similarity in treatment recommendations across jurisdictions will be highly useful in providing information to governments in developing improved policy and programming. This data will also provide important information to develop effective prevention messaging and interventions and supports for families.
The Canada Fetal Alcohol Spectrum Disorder Research Network (CanFASD) is an interdisciplinary research network, with researchers and partners across the nation. It is Canada’s first comprehensive national Fetal Alcohol Spectrum Disorder (FASD) research network.
CanFASD recently held a first-of-its-kind, collaborative FASD event with caregivers, government officials and FASD research experts to set the research direction for coming years. The results of this event are now available on the CanFASD website.
Women and Opioids Media Guide created to encourage informed messaging and reporting surrounding women and the opioid crisis in Canada
May 7, 2018 – The Centre of Excellence for Women’s Health (CEWH) has created the Women and Opioids Media Guide in response to the serious and growing opioid crisis in Canada. The Media Guide provides information specific to the circumstances and impact of the opioid crisis on women and is intended to be used a resource for media addressing or covering the subject of opioids and opioid use.
“Women are affected differently than men by the opioid crisis and the approaches to preventing and addressing opioid misuse and addiction need to pay attention to these differences,” says Nancy Poole, CEWH’s Director. “Sharing information about gendered responses to the opioid crisis can help to reduce the stigma surrounding opioid misuse and encourage both women and men to access support.”
The guide was created by researchers at CEWH in partnership with the Canada FASD Research Network. CEWH researchers conducted reviews of the literature, and identified evidence-informed prevention and treatment practices in collaboration with health and social care practitioners from across Canada. The 8-page Media Guide and a 60-page Discussion Guide for Health Care and Social Service Providers about trauma- and gender-informed approaches to the opioid crisis were created with financial assistance from Health Canada.
The Centre of Excellence for Women’s Health
The Centre of Excellence for Women’s Health is a research and knowledge exchange centre focused on sex and gendered approaches to health, with strong roots in policy, practice, academic and community networks. CEWH is hosted by BC Women’s Hospital + Health Centre, an agency of the Provincial Health Services Authority.
Learn more at: http://bccewh.bc.ca/
To view the full Discussion Guide for Health Care and Social Service Providers, visit
To set up an interview
If you would like to interview one of the project researchers and/or if you would like an expert opinion on the opioid crisis and women, please contact:
FASD Common Messaging and Language Guide created to combat misconceptions about Fetal Alcohol Spectrum Disorder
September 5, 2017—The 18th annual International Fetal Alcohol Spectrum Disorder (FASD) Awareness Day will take place this Saturday, September 9. The Canada FASD Research Network (CanFASD) has released its FASD Common Messaging (attached) and FASD Language Guide (attached) in advance of International FASD Awareness Day. Both tools work to promote the dignity of those with FASD and help to explain the complexity of the disorder to those addressing the topic. FASD is a complicated disorder that is often surrounded by stigma and misinformation. CanFASD’s Common Messaging document is intended to improve public understanding of FASD by directly addressing many of the common misconceptions surrounding it. “There is a lot of incorrect information about FASD and about people with FASD circulating in the public. That’s why we developed a tool that addresses these topics head on,” says Audrey McFarlane, CanFASD’s Executive Director. “For example, news stories often pop up suggesting that small amounts of alcohol are safe to drink during pregnancy. In reality, despite extensive research, there has been no established safe level of alcohol to consume during pregnancy. This type of misinformation can have significant, lasting impacts on women and families and needs to be corrected.” The Language Guide is a tool that outlines common but unproductive language that is often used when speaking about FASD, then presents alternative language and the reason it should be used instead. Dr. Nancy Poole, a CanFASD researcher, explains that FASD is caused by prenatal alcohol exposure, but the reasons why and how this happens are not quite so matter-of-fact. “It is important to be empathetic and welcoming towards women who may have difficulty stopping or reducing their drinking. It is important not to use distancing terms like ‘those women’, or black and white terms like ‘100% preventable’. The motivations for peoples’ use of substances is never black and white – it’s a complex, multifaceted issue.” International FASD Awareness Day is held on September 9th – the ninth day of the ninth month of the year – to represent the nine months of pregnancy. The purpose of the Day is to promote awareness of the risks of drinking alcohol during pregnancy and improving the understanding of FASD so that those affected and their families can be better supported. This year CanFASD will be supporting and promoting events of organizations and groups participating in International FASD Awareness Day. Most organizations will be holding events on Friday, September 8 instead of Saturday, September 9. CanFASD’s social media platforms will be highlighting FASD Awareness Day events happening around the country on September 8:
About CanFASD: The Canada Fetal Alcohol Spectrum Disorder Research Network (CanFASD) is an interdisciplinary research network, with researchers and partners across the nation. It is Canada’s first comprehensive national Fetal Alcohol Spectrum Disorder (FASD) research network.For more information on CanFASD, please visit: https://www.canfasd.ca/ Attached documents include:
- Common Messages—document directly addressing many of the common misconceptions surrounding FASD
- Language Guide—document that outlines common but unproductive language that is often used when speaking about FASD, then presents alternative language and the reason it should be used instead
For expert commentary on International FASD Awareness Day or to learn more about the FASD Common Messaging and/or FASD Language Guide, please contact: Audrey McFarlane, CanFASD Executive Director 780.815.0406 AMcFarlane@lcfasd.com
New consensus on enacting the Truth and Reconciliation Commission’s Call to Action on Fetal Alcohol Spectrum Disorder
Vancouver, June 1, 2017—Leading experts in FASD and Indigenous health and wellness from across Canada have built consensus on promising approaches to address and prevent Fetal Alcohol Spectrum Disorder for Indigenous Peoples. In its report two years ago, the Truth and Reconciliation Commission released 94 Calls to Action. Call to Action #33 focuses on Fetal Alcohol Spectrum Disorder (FASD). It reads:
“We call upon the federal, provincial and territorial governments to recognize as a high priority the need to address and prevent FASD, and to develop, in collaboration with Aboriginal people, FASD preventative programs that can be delivered in a culturally appropriate manner.”
Recently, the Centre of Excellence for Women’s Health, the Thunderbird Partnership Foundation and the Canada FASD Research Network co-organized a dialogue event where experts from across Canada met to discuss Call to Action #33 and how it could be met. A Consensus Statement was developed which includes eight tenets for enacting Call to Action #33.
- Centering prevention around Indigenous Knowledge and Wellness
- Using a Social and Structural Determinants of Health Lens
- Highlighting Relationships
- Community Based, Community Driven
- Provision of Wraparound Support and Holistic Services
- Adopting a Life Course Approach
- Models Supporting Resiliency for Women, Families, and Communities
- Ensuring Long-Term Sustainable Funding and Research
The convening organizations urge all orders of government across Canada to adopt the tenets outlined in the Consensus Statement as we move forward as a country toward Truth and Reconciliation.
Audrey McFarlane, CanFASD Executive Director: “Supporting First Nations, Inuit and Metis peoples in implementing evidence-based, culturally appropriate and community-driven responses to FASD is a critical responsibility of Canadians.” Carol Hopkins, Thunderbird Partnership Foundation Executive Director: “These tenets and the group’s Consensus Statement follow the principles of reconciliation – mutual respect, recognition, sharing, and an understanding that all people are equal honours the historic Truth and Reconciliation report.” Dr. Nancy Poole, Centre of Excellence for Women’s Health Director: “We look forward to working with CanFASD, Thunderbird Partnership Foundation and other Indigenous organizations to share these tenets broadly as we develop and study programming on prevention of FASD.” About the Organizations: The Thunderbird Partnership Foundation works with First Nations to further the capacity of communities to address substance use and mental health issues. The non-profit organization promotes a holistic approach to healing and wellness that values culture, respect, community, and compassion. The mission of the Centre of Excellence for Women’s Health (CEWH) is to improve the health of women by fostering collaboration on multidisciplinary and action-oriented research on girls’ and women’s health and to introduce gender into health research. The CEWH pays particular attention to research that will improve the health status of girls and women who face health inequities due to socioeconomic status, race, culture, age, sexual orientation, geography, disability and/or addiction. The Canada FASD Research Network is a group of the leading experts on FASD in the country including academic researchers and front line care providers. Their mission is to produce and maintain national, collaborative research designed for sharing with all Canadians and leading to prevention strategies and improved support for people affected by FASD. -30- Attached: Consensus Statement: Eight Tenets for Enacting the Truth and Reconciliation Commission’s Call to Action #33 Experts are available to speak with the media about the consensus statement from any of the above organizations. Please contact: Sherry Huff Thunderbird Partnership Foundation 519-692-9922 ext 306 email@example.com Download media release: English | français Download consensus statement: English | français
Safest not to drink during pregnancy, best recommendation
CanFASD cautions that although conversation about stigmatization is important, there is still no established safe level of alcohol to consume during pregnancy May 19, 2017 — CanFASD, Canada’s leading FASD research network, says that a recent article posted by the The Guardian presents potentially harmful information about pregnancy and alcohol. The article posted on Thursday, May 18th claimed that warning pregnant women over dangers of alcohol goes too far. A similar article posted to The Telegraph states that advising women not to drink while pregnant is “sexist” and causes “needless anxiety”. The two articles are based on a news release issued by the British Pregnancy Advisory Service promoting an upcoming conference entitled, Policing Pregnancy: Who Should be a Mother? CanFASD agrees that although conversation around compassionate, non-judgmental ways to communicate this message to women and expectant mothers is indeed important—the current recommendations do not overstate risk, nor do they remove a woman’s right or ability to make a choice, rather, they provide clear, essential information in order that she may do so. Providing women with accurate information and a supportive, safe environment to make the healthiest choice for herself and her developing baby are essential in reducing prevalence of FASD. Dr. Nancy Poole, Director of the Centre of Excellence for Women’s Health and Prevention Lead with CanFASD Research Network says:
“It is indeed a challenge to give helpful health messaging to women about alcohol and pregnancy, when there is no known safe level of alcohol consumption when pregnant. As the Guardian article correctly points out, alcohol is a teratogen, which means it causes birth defects. Women have a right to know this. The message that it is “safest not to drink alcohol in pregnancy” seems a quite clear and non-threatening way to state the risk.
Then women make the best decisions they can, with the support of their health care providers, on their use not only of alcohol, but also use/exposure to tobacco, some prescribed medications, and environmental chemicals known to cause congenital abnormalities. Clear public health messaging, coupled with the opportunity to discuss the risks with a compassionate and informed health care provider are critical to support women’s and fetal health.”
The recommendations in question come from the UK chief Medical Officers who last year altered guidelines to advise avoiding alcohol altogether for the duration of a pregnancy. The recommendations, which align with those from The Public Health Agency of Canada, are based on the fact that, despite extensive research, there is still no established safe level of alcohol to consume during pregnancy. The previous guidelines encouraged exercising moderation through one to two units of alcohol once or twice a week. However, terms such as moderate, low level and light are unclear and subjective. Conflicting messages in the media about how much alcohol can be safely consumed perpetuate confusion. The clearest message is that not consuming alcohol at all during pregnancy is completely safe. CanFASD encourages a discussion that pushes people to question the place of alcohol in society and our reluctance to consider its harms. ”Instead of questioning how much is safe to drink while pregnant, CanFASD encourages discussion around society’s resistance to accept the harmfulness of alcohol.” says Audrey McFarlane, CanFASD executive director. -30- For more information or to speak to Dr. Nancy Poole, please contact: Abby Sherstan, Berlin Communications asherstan@BRLN.ca 780.995.5695 About CanFASD: The Canada Fetal Alcohol Spectrum Disorder Research Network (CanFASD) is a collaborative, interdisciplinary research network, with researchers and partners across the nation. CanFASD’s unique partnership brings together many scientific viewpoints to address complexities of FASD, with a focus on ensuring that research knowledge is translated to community and policy action. Our mission is to produce and maintain national, collaborative research designed for sharing with all Canadians, leading to prevention strategies and improved support services for people affected by Fetal Alcohol Spectrum Disorder. Download release