Statistics & CF
- United States
- General CF Stats
- Cystic Fibrosis Foundation Registry Data
-
Cystic Fibrosis Foundation, Patient Registry, Annual Data Report
The latest one available is 2006. (Link updated Aug. 22, 2008)
-
Cystic Fibrosis Foundation Registry, Center Report for Children's Hospital
Boston from 2005 (Added Aug. 25, 2008)
-
Cystic Fibrosis Foundation Registry, Center Report for Children's Hospital
Boston from 2004 (Added Aug. 25, 2008)
-
The U.S. Cystic Fibrosis Patient Registry data book of 2000 states that
they track 22,301 CF patients at U.S. CF Care Centers (You'll need
a password to get into the archives, go
here for one.) (Link updated Oct. 12, 2007)
-
CF Registry for 2000 data for Evaluations and Types of Transplants
(Link updated Oct. 12, 2007)
-
CFF Statistics from 2000 on age of first culture of PA (Link updated
Jan. 1, 2008)
- According to the CF Foundation there were 419 CF deaths in 2000.
Out of the 419 deaths in 2000, they report 320 from CF centers and 99
from elsewhere. If physicians and hospitals don't register the patient as
having CF, or the patients are undiagnosed, then the figures will not be
100% accurate. (Added Feb. 19, 2002)
-
Whites and Non-whites: CF incidence among infants born in the
U.S.A. from the CFF Patient Registry data for the years 1989 to 1991. The
resulting estimate of incidence relative to live births among whites is
1:3419 while that among non-whites is 1:12,163. (Added
Mar. 18, 2003)
- About the CFF
- Various Data about CF
- CF occurs in about 1 in every 3,200 live Caucasian births. (In one of
every 3,900 live births of all Americans.)
- There are about 1,000 new cases of CF diagnosed each year.
- Most individuals are diagnosed by the age of three; however, nearly 8
percent of all newly diagnosed cases are 18 or older.
- One in 31 Americans (one in 28 Caucasians) more than 10 million
people is an unknowing, symptomless carrier of the defective gene.
- The CFF cites 72% survival at one year for living donor
transplantation operations nationally. (Added Nov. 9, 1999)
- Over 900 new cases reported in 2000. (Added Feb. 19, 2002)
- Articles
- Presentations
- Canada
- The population of Canada is approximately 30,000,000. Based on the most
recent evaluation (1996), there are 3098 people
with CF in Canada. This is the number of people that attend CF
clinics. It is safe to assume that this number is fairly accurate as CF
patients usually need to attend a clinic to get their medication. However,
there probably is a small percentage of people with CF the CCFF does not
know about. That's approximately 0.01% of the Canadian population that has
CF. About 1 in 2,500 children born have CF. About 1 in 25 Canadians are
carriers. (Thanks to Sandy Panditharatne of the CCFF for verifying
these facts for me. These stats are from 1996, in Canada.) (Updated Apr.
25, 1999)
-
Canadian Cystic Fibrosis Patient Data Registry Report 2007
- 1996: The median age of survival of people with CF in Canada is
31.9 years, based on 1996 evaluation. (From Sandy Panditharatne of the CCFF)
(Updated Apr. 25, 1999)
- 2002:
The CCFF
announced on May 26, 2002, that the median age of survival of young
Canadians with cystic fibrosis has risen to over 35 years. (Link
updated Aug. 25, 2004)
- 2002 Facts from the CCFF (Added Oct. 7, 2002)
- Approximately 60% of patients are diagnosed in the first year of life,
and 90% by 10 years of age.
- Over 3,300 children and adults in Canada have cystic fibrosis.
- One in every 25 Canadians carries the gene responsible for cystic
fibrosis.
- In the 1960s, the median age for survival of Canadians with CF was
four years.
- In 1974, the median age of survival of an individual with CF in Canada
is 24 years.
(Source) (Added Oct. 24, 2004)
- In Canada, the median age of survival has been over 30 years since the
late 1980s.
- In 1997, the median age of survival for individuals with CF in Canada
reaches over 32 years.
(Source)
(Added Oct. 24, 2004)
- In the late 1990s, over 45% of all Canadians with CF were 18 years, or
older.
- Researchers have identified over 1000 mutations of the CF gene. The
most common is Delta F508 it is found in over 70% of people with CF.
- All Canadian CF clinics participate in the collaborative undertaking of
the Foundation's Canadian Patient Data Registry (CPDR). The purpose of the
CPDR is to identify and track statistical trends within the CF population,
thereby providing an accurate profile of CF in Canada; to generate questions
which can be addressed through research; and to contribute to improved
clinical care and eventually a cure or control for CF. Statistics from the
most recent report (year ending 2001) (Source: Cyber.Flash, e-newsletter of
the CCFF, Fall/Winter 2003) (Added Nov. 14, 2003)
- Median age of survival: 35.9 years (the highest ever in Canada)
- Number of Canadians with CF: 3390
- Number of adults with CF (18+): 1597 or 47.1% of the Canadian CF
population
- Average age: This number was not tracked in Canada in the past.
However, from this year onwards (1999), the mean age will be calculated.
(Added Apr. 25, 1999)
- Older PWCF in Canada: Based on the most recent evaluation (1996),
there are 16 people over the age of 50 in Canada. (From Sandy Panditharatne
of the CCFF) (Added Apr. 25, 1999)
- Definitions (Be careful, as these terms are not the same thing!)
(Added Apr. 25, 1999)
- Average Age: All of the ages are added up, and then divided by
the number of people in the calculation.
- Median Age: Half of the people are younger than that age, and
half of the people are over that age.
- Mean Age: Halfway point between the youngest and the oldest.
- The CCFF provides supplementary grants to 36 CF clinics across Canada.
(Added Apr. 25, 1999)
-
Determinants of Mortality from Cystic Fibrosis in Canada, 1970-1989
(short version), by Mary Corey and Vernon Farewell, in American Journal of
Epidemiology, Volume 143, No. 10, 1996, 1007-17 (Link updated Sept. 30,
2003)
- With symptomatic treatment only, prognosis has improved steadily from
death in early infancy in the 1940s, to a median survival age near 30
years in the 1990s.
- However, the consistently poorer survival for females has no
explanation and is contrary to trends in all other pediatric diseases.
- Since 1970, the CCFF has operated the Canadian Patient Data Registry
(CPDR). It started with sex, birth date, race, date of diagnosis, presence
of Meconium Ileus, and annual status (alive, dead, or lost to follow-up).
From 1985, they added height, weight, pulmonary function and sputum
bacteriology. In the first quarter of each year, clinic directors receive
a set of pre-printed forms for each patient previously reported. Data for
the year just ended are added, including clinical measurements from the
first regular visit in the year, and new forms are initiated for new
patients. Names are not used, just code numbers. Only the CPDR manager has
access to the names. Annual summaries are compiled.
- Meconium Ileus was not found to be a significant predictor of
survival.
- There was impressively low mortality in very young CF children in all
regions of Canada between 1985-1989, with 98% survival to age 5 years, and
95% survival to age 10 years.
- The median age
of survival of Canadians with CF is now 37 years
(Link updated Jan. 11, 2008)
- Statistics from the most recent report (year ending 2002): Median age
of survival: 37 years, Number of Canadians with CF: 3,453, Number of
adults with CF (18+): 1,599 or 47.6% of the Canadian CF population
(Added Nov. 28, 2004)
- Newfoundland (A Province in Canada) (Stats from Candid Facts,
Vol. 3, Fall 1999) (Added Nov. 8, 1999)
- Approximately 75 individuals with CF live there
- 11% are under 5 years old
- 37% are under 5-15 years old
- 32% are under 15-25 years old
- 20% are odder than 25 years old
- Nova Scotia
- There is wide variation in the age at diagnosis in CF. Multiple
factors are involved but a review of the data in the database I have
maintained which covers the years between the start of the clinic in the
fall of 1958 and the present, shows the age-spread. In this database, the
age at diagnosis for all patients diagnosed in NS between 1958 and the
present has been recorded but for some patients diagnosed elsewhere, the
precise date of diagnosis was not available so that the precise age at
diagnosis cannot be calculated for these patients. 524 patients from all 4
of the Atlantic Provinces have been registered in our clinics since 1958
but only data from those who with a precise date of diagnosis can be used.
Of the 524 patients, 419 had precise dates of diagnosis so that the age at
diagnosis could be calculated. Those patients in whom a precise date of
diagnosis was not available were from outside NS; all patients diagnosed
in NS had a precise date of diagnosis thus allowing for age at diagnosis
to be calculated . Total number of patients included: 419 out of a total
of 524 seen in the clinics in Halifax.
- AGE AT DIAGNOSIS
- < 1 year 247 (59%)
- 1 - 5 yr 88 (21%)
- 5 -10 yr 29 (07%)
- 10 -20 yr 37 (09%)
- 20 - 30 yr 5 (01%)
- 30 - 40 yr 7 (02%)
- 40-- 50 yr 2 (<1%)
- This information received from Dr. C. T. Gillespie, MD, Retired, IWK
CF Clinic Director (1966 - 1992) (Added May 13, 2002)
-
Cystic Fibrosis Birth Rates in Canada: A Decreasing Trend since the Onset of
Genetic Testing (Link updated Jan. 11, 2008)
General Statistics
- 80% of children with cystic fibrosis are born to parents with no prior
history of the disease (Added Nov. 23, 1999)
- The principle age of diagnosis for most patients is between 3 months and
six years. (Added Feb. 15, 2001)
- More and more frequently we are finding people diagnosed relatively late
in life. About 800 people have been diagnosed late with CF (after the age of
18) since 1996. The oldest known person diagnosed late is an 82 year old
male. (Updated May 3, 2001)
- Approximately 80% are diagnosed before age 6. Most CF diagnoses are made
before the age of two. (Added May 3, 2001)
- Chronic Progressive Lung Disease causes the majority (about 90%) of
deaths in CF. (Source: IACFA Newsletter, Issue 56, 1999, page 3) (Added
May 22, 2003)
- More than 50% of CF patients are hospitalized at least once a year for a
median duration of 10 days per admission. (Source: IACFA Newsletter, Issue
56, 1999, page 4) (Added May 22, 2003)
- In early childhood, patients may have Staphylococcus aureus and
Haemophilus influenzae, and by the age of 17 years, nearly 70% of CF
patients are colonized by Pseudomonas aeruginosa. (Source: IACFA Newsletter,
Issue 56, 1999, page 4) (Added May 22, 2003)
International/Worldwide
-
International Comparison of Median Age at Death From Cystic Fibrosis
(Added Aug. 14, 2001)
-
Incidence of CF and Carrier Frequency in Various Races (Added Mar. 26,
2003)
- CF affects approximately 70,000 people worldwide (Source: IACFA
Newsletter, Issue 56, 1999, page 8) (Added May 20, 2003)
- There were 1,817 persons with CF who are 40 years of age and over.
A theoretical statistical model predicts that two-thirds of these
individuals will reach the age of 60.
Source
of this info: Candid Facts, Page 3 (Added Jan. 26, 2004)
Denmark
- The mean age of PWCF there is 19 years of age. (Frederiksen B, Lanng S,
Koch C, Hoiby N.
improved survival in the Danish centertreated cystic fibrosis patients:
results of aggressive treatment. Pediatric Pulmonology
1996:21:153158.) (Link added Sept. 27, 2004)
- The range in ages is from 0 to 50 years old. (same source as above)
(Added June 30, 1999)
- The incidence of CF in Denmark is 1:4,700 births, which is that expected
from a population with a CF carrier rate of 1:37 ( Schwartz M, Johansen HK,
Koch C, Brandt NJ. Frequency of dF5O8 mutation on cystic fibrosis
chromosomes in Denmark. Hum Genet 1992:85:427-428). (Added June 30, 1999)
Finland
- Total Population=5,160,000. Only 48 Finns have CF. That's less than
0.01%, actually about 0.001%...Every year, of the 60,000 babies born there,
one or two are diagnosed with CF. The oldest living person at the present
time with CF in that country is 27 years old. (Added Sept. 4, 1999)
Sweden
India
Asians
Scotland
Lung Transplantation
- Current international survival figures for lung transplantation are
about 70 percent at one year
and 45 percent at four years. (Added
Nov. 7, 1999)
Mexico
- The life expectancy for a person with CF living in Mexico is 9 years.
Likewise, and in accordance to a study performed by the Mexican CF
Foundation, only 10% of children born with CF are actually diagnosed with
the disease. (Source: IACFA Newsletter, Issue 56, 1999, page 15) (Added
May 22, 2003)
Germany
United Kingdom
Ireland (Republic of Ireland)
- This information that was recently compiled by the Irish CF Registry.
I received it from Godfrey J. Fletcher, Interim CEO,
The Cystic Fibrosis Association of
Ireland (Link updated Nov. 21, 2006)
- 1993 19.5 median age
- 1994 19
- 1995 17
- 1997 15.5
- 1998 20
- 1999 16.5
- 2000 17
- 2001 23
- 2002 19
- 2003 23.5
- 2004 25
- Info from
"Summary of Dr Pollock's report: The Treatment of Cystic Fibrosis in
Ireland: Problems and Solutions 2005" (Link updated Nov. 21, 2006)
- Ireland has the highest incidence of cystic fibrosis in the world.
There are more than 1,100 cystic fibrosis patients (45% adults & 55%
children) in the Republic of Ireland.
- A review of present services (2004) indicates that a total of 1,143
patients is under care in Ireland:- 517 are Adults (45%) 626 are
Children (55%)
- Cystic fibrosis is also Ireland's most common life-threatening
genetically inherited disease affecting one in every 1,600 births.
- 10
Minute Radio Segment from RTE Radio (Ireland's National Radio Station), from
Jan. 10, 2008, on the status of CF care in Ireland at the present time
(Added Jan. 28, 2008)
Belgium
France
South Africa
Brazil
Europe
Males versus Females
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