News
Did
she miss a chance to boost her chances
The Globe and Mail : Renee Stocks, who has a rare medical
disorder - glutaric acidemia type II, is a poster child for Canada's patchwork-quilt
approach to newborn screening.
12/31/07
Ontario
Newborn Screening Program to begin screening for Cystic Fibrosis
Hospital News : Cystic fibrosis (CF) will soon be added to
the growing list of disorders included in the expanded Ontario Newborn Screening
panel. Ontario is the second jurisdiction in Canada to perform testing for
CF, following the success of the Calgary Newborn CF Screen Pilot Project
10/07
Tests
may help end 'bubble boy' disease
CTV/Associated Press: Doctors were stumped. Tests for meningitis,
cancer, a list of other diseases all were negative -- yet just days after
a sudden high fever sent 8-week-old Anthony James Mingione to the hospital,
he died. An autopsy uncovered the lethal secret: Anthony was born without
a working immune system. A rare genetic disorder known as the "bubble
boy disease" rendered him vulnerable to the most minor of germs.
01/1/07
CHEO
Lab to Screen Newborns for CF
Ottawa Citizen: Early diagnosis can prevent irreversible
lung damage
12/2/06
Ontario
adds cystic fibrosis to list of screening tests for newborns
The Globe and Mail: Starting late next year, newborn babies
in Ontario will be tested for cystic fibrosis in addition to 27 other diseases.
11/23/06
News Release: Click here to display the Ontario Government's press release.
Alberta to test newborns for cystic fibrosis
CBCNews: Alberta will soon be the first province in Canada
to test newborns for cystic fibrosis.
09/28/06
News Release: Click here to display the Alberta Government's press release.
Opening the Screen Doors: Newborn Testing
Todays Parent Magazine: Canada is taking baby steps towards
improving newborn screening.
09/01/06
McGuiny Govenment Improves Newborn Screening
News Release: State-of-the-art Lab at CHEO will help families
across Ontario (includes a video). New tests will help
every baby born across the province and make a positive difference for Ontario
families.
Background
document
05/23/06
Newborn Genetic Testing Lab Opens at CHEO
Ottawa Citizen: A state-of-the-art facility will test for
27 disorders by 2007. CHEO's state-of-the-art newborn screening facility has
begun testing blood samples from all babies born in Ontario for three rare
genetic disorders.
04/10/06
$40 Test Could Have Saved Her Baby's Life
Global Television: Shortly after her 9-month-old baby daughter
died, an Ontario mother learned that a simple $40 blood test could have prevented
her death, and that the test -- not covered in their province -- is standard
in others. Four years later, she is fighting to prevent other Canadian children
from sharing the same fate.
03/30/06
CF screening breathing new life into newborns
The Globe and Mail: A new cystic fibrosis screening program
is breathing new life into newborns in Calgary. This city has first newborn
screening program in Canada, which started this summer.
12/20/05
Newborn screening gets a booster in Ontario
National Review of Medicine: Programs vary province-to-province.
Ontario initiative fires calls for comprehensive nationwide plan.
10/15/05
CityTV: In BC, about 15 newborns each year are diagnosed
with serious metabolic disorders that are discovered through screening. But
there are hundreds of these types of inherited disorders and we currently
test babies for only 4. Now, Ontario is expanding its program from 2 to 21
disorders and some US states are testing for much more than that, so what
will BC do next?
9/30/05
Ontario to extend screening of newborns for inherited disorder
CBC News: The Ontario government is going to extend its
screening program of newborns for inherited disorders. Babies are currently
tested for two diseases. Under the new program, they will be tested for an
additional 19.
9/08/05
Ontario Trails In Baby Test Technology
Ottawa Citizen: Ontario has only a six-month supply of
the chemical it currently uses to test newborn babies for phenylketonuria,
a congenital metabolic disorder that causes neurological impairments in newborns,
says a provincial health ministry official.
8/26/05
CHEO Seeks Newborn Blood Screening Centre
Ottawa Citizen: The Children's Hospital of Easter Ontario
(CHEO) is vying to be the new provincial facility that tests blood samples
from 135,000 Ontario newborns each year for inherited disorders, say hospital
officials. In early August, the Ministry of Health and Long-Term Care sent
a letter to CHEO and at least five other Ontario hospitals, asking for proposals
by Sept. 2 regarding their capacity to house the provincial newborn screening
facility.
8/26/05
Lack Of Cash Blamed For Federal Inaction On Screening
Ottawa Citizen: The federal government is looking at the
issue of genetic screening for newborns but has no plans to standardize such
screening across the country because it lacks the resources, says a Health
Canada official.
8/19/05
Doctors Want Newborns Tested For Greater Number Disorders
Ottawa Citizen: A CHEO doctor is hoping to soon see widespread
genetic screening for newborns in the wake of what he describes as a provincial
request to area hospitals to submit proposals on such a program. A letter
sent by the Ministry of Health and Long-Term Care at the beginning of August
to major Ontario hospitals has them assessing their ability to operate a provincial
newborn screening program, Dr. Michael Geraghty, of CHEO's Department of Genetics,
said yesterday.
8/17/05
Too Few Genetic Tests
Toronto Star: Dozens of Ontario children are condemned
to lives of "misery and despair" or death from rare but preventable
diseases because the province doesn't do enough genetic testing of newborns,
Ontario's ombudsman charges. André Marin said last night he's launching
a special investigation into the problem, which his office discovered during
a probe into why the province won't fund life-saving drugs for a Barrie teenager
with Batten's disease.
8/12/05
Ontario To Increase Screening For Babies
National Post: More funds to catch rare but preventable
newborn diseases are on the way, Health Minister George Smitherman promised
Friday as Ontario's ombudsman insisted Canada remains like a Third World country
on the issue.
8/12/05
Falling Behind In Screening Babies
The Globe and Mail: Within hours of birth, every newborn
gets the infamous heel prick -- a few drops of blood drawn and smeared onto
a special piece of paper. Those samples are sent to a laboratory, where they
are tested for rare genetic disorders.
8/11/05
Canada Lags On Newborn Screening ~ Canadian Medical Association Journal
Canadian Medical Association Journal: As the US government
prepares to recommend national core newborn screening for 29 conditions and
disorders, testing in Canada varies widely. Saskatchewan is the only jurisdiction
that tests for 29 conditions, while Ontario and New Brunswick test for just
3 things including hearing.
7/5/05
Newborn Screening: Inborn Errors of Metabolism ~ Wellness Options Magazine; Issue #19 Genes
Wellness Options Magazine: Genetic diseases account for
a significant proportion of hospitalized children in referral centres. About
6 to 8% of diseases among hospitalized children are attributed to single-gene
defects and from 0.4 to 2.5% to chromosomal abnormalities; another 22 to 31%
are considered gene influenced.
6/15/05
Speech From John Baird on Newborn Screening in Canada
Legislative Assembly of Ontario: Mr. John R. Baird (Nepean-Carleton):
I'm pleased to rise in support of advancing the cause of newborn screening
in the province of Ontario. Last week, on June 1, John Adams and a number
of parent advocates visited Queen's Park to talk about the importance of screening
more young babies for serious disease. They were really giving Ontario a call
to action to fill the gaps in newborn screening and to develop an inclusive
and comprehensive system for saving babies from rare but serious conditions
which can do these newborns great and serious harm.
6/7/05
Group Urges Increase In Newborn Screening
The London Free Press: Dozens of babies born each year
in Ontario could be spared a lifetime of health complications if the province
increased newborn screening for rare but serious ailments, parent advocates
said yesterday. Ontario tests infants for just three conditions -- fewer than
any other province. Saskatchewan tests for 29.
6/2/05
Health Minister Promises Improvements To Newborn Screening
Global TV: Here's a disturbing fact about our health care
system. Turns out Ontario does the worst job of screening newborn babies for
rare illnesses. Ontario only tests newborns for three conditions; Saskatchewan
by comparison tests for 29. Early detection for illnesses like sickle cell
anemia and thalassemia can spare kids years of severe trauma. Ontario's Health
Care Minister isn't promising Saskatchewan's high standards, but says improvements
are on the way.
Health Minister, George Smitherman: We can do better, and we will. And
within two months you'll see our government's plan to improve newborn screening.
6/1/05
Early Detection Could Save Many Kids From Illness Later On In Life
CBC News - Anchor: Forty years ago, Ontario
broke new ground. It was the first province to begin screening newborn babies
for rare blood diseases, tests that spared an estimated 1400 people from severe
mental disabilities. Despite that successful beginning, a group of parents
and doctors say Ontario has fallen behind. And they warn hundreds of children
are being put needlessly at risk. Our Queen's Park reporter Mike Wise explains.
Lizon Brazeau, Parent: You're tired, eh? It's a very hard To do. To just
sit there.
6/1/05
Parents Want Government To Improve Testing For Newborns
Global TV - Leslie: We begin tonight with an emotional
appeal from parents asking why won't Ontario fund tests that could save hundreds
of babies a year from death or disability, tests now routine elsewhere. Sean
Mallen has our top story tonight.
Sean: Andrew Ouellette looks like any four-year-old boy, enjoying the
pleasures of a sprinkler on a sunny, warm day. Look more closely, and you'll
see he is quickly out of breath. Andrew has something called l-chad condition,
it forces him to eat a very restrictive low-fat diet.
6/1/05
More Baby Tests Urged
Toronto Sun: Forty years ago, Ontario began screening newborns
for a hidden threat -- a metabolic disease that, undetected, could leave children
profoundly disabled by their first birthday. Although technology has progressed
to the point that dozens of treatable conditions can be diagnosed with a spot
of blood, the province now lags far behind many other jurisdictions in potentially
life-saving screening.
5/29/05
'We Got Our Child's Diagnosis From Her Death'
Toronto Star: When 9-month-old Jenna got sick in November
2002, her mother Tammy hoped she wasn't getting the miserable flu that had
felled her son Justin, 2, the week before. But the next day, her pediatrician
confirmed her fears, told her to give the baby Tylenol for the fever and to
"keep pushing fluids." But Clark didn't get much chance to do that.
At 6:30 the next morning, the beautiful red-haired baby died in her mother's
arms as her husband frantically called 911.
5/13/05
Just A Simple Blood Test - Many Cases Of MCADD Are Only Detected In Post-Mortems
Toronto Star: Connor Kahler was 18 months old and miserable
on Christmas Day, 2002. He woke up vomiting and spent the day lying listlessly
on the couch instead of happily opening presents at his Brampton home. When
his mother Jacey started getting him ready for bed that night, his eyes rolled
back in his head. By the time he was rushed to the Hospital for Sick Children,
he was having seizures.
5/13/05
Parents Call For More Diligent Newborn Screening
The Kingston Whig-Standard: Fifteen-month-old Isaac McMillan
is unable to sit up or crawl and his left eye turns inward, so that he tilts
his head to look at people and things with his good eye.
4/19/05
Parents, Doctors Debate Value Of Newborn Screening Tests
CBC News- Simple blood tests can now detect obscure genetic
diseases that may be deadly in newborns, but there's a debate over whether
all the tests are worthwhile. Canadian doctors agree it's valuable to screen
for two common genetic diseases called congenital hypothyroidism and PKU.
Some parents and medical ethicists want every baby born in the country to
be screened for many more.
3/9/05
Events:
Rare Disease Day - February 29, 2007
For more information visit the Canadian Association for Rare Disorders website.
National Conference on Newborn Screening
For more information visit the Canadian Association for Rare Disorders website.
Petitions
Petition in Canada for Krabbes Disease
Save Babies Through Screening Foundation of Canada would like to encourage you to participate in a petition to have Krabbes disease screening added to Canada's newborn screening. The petition is headed by Corinne Arthurs whose little girl, Breanna Corinne, died in January from late-diagnosed Krabbes disease. The petition is available to sign online, via Breanna's website. Corinne Arthurs can be reached by email. 3/28/05
Research Studies
University of Alberta - Use of Online support web sites by parents of children with genetic disorders
Invitation from the University of Alberta to PARENTS to participate in a study concerning the use of online support Web sites by parents of children with genetic disorders.
The focus of the study is to learn why parents are using online support Web
sites (e.g. social support or information) and how this relates to various
characteristics of the parents and the child’s illness. The study is
also interested in :
- what aspects of online support Web sites parents use the most and which aspects they find the most helpful.
- the relationship between online and offline support among these parents.
For more information on this study please click here to view the study details.
Posted: 02/07
University of McMaster - Carrier status determined as a result of newborn screening for sickle cell disorders: Exploration of alternatives for management of carrier status information in Ontario
Invitation/Notice from McMaster University : Mothers & Fathers with Infant Children: We would like your thoughts about Newborn screening
Shortly after birth, all babies in Ontario are tested for a number of uncommon childhood diseases through the newborn screening program. We would like to know what parents think are the best ways to manage information generated by the screening process. If you are a post-partum mother or if your partner has recently had a baby (between 3 and 12 months old), please consider participating in a 2 hour group interview to let us know your thoughts. We offer a $50 honorarium in thanks.
For more information on this study please contact the research coordinator Martha Paynter at McMaster University 905-525-9140 ext 22135 or Email: payntemj@mcmaster.ca.
Posted: 11/06
University of Ottawa - Genetics Research Project
Researchers from the University of Ottawa are currently conducting a research project on genetics. They are seeking the help of people who may have had contact with genetics services, recently or in the past. The project is funded by the Canadian Institutes of Health Research and is approved by the Children’s Hospital of Eastern Ontario. The goal of the research project is to determine what should be measured to know whether a genetics service (e.g., the genetics clinic at a hospital) is doing well. The project is built around a Delphi survey (consensus process) and need the views of a broad range of people with insight into genetics services.
To find out more about this project please click on the following link: http://www.genesens.net/public/en/nouvelles.cfm?id=27
Posted: 05/2006