Disclaimer: This information is based entirely on the membership of the Craniopharyngioma Online Support Group and should only be used in that context. It is not necessarily statistically random or representative of the average craniopharyngioma patient. Information such as geographical location should not be interpreted to indicate higher rates of tumors in one location versus another.

MEMBERSHIP
Subscribed email addresses: 221
Total registered names: 408
   Patients: 209
   Caregivers/relatives: 194
   Others (medical, etc.): 5

There are 4 subscribers with no patient information, and 4 subscribers where
the patient has died.  These are not included in the statistics.


PATIENT SUMMARY
Number of patients: 209
   Male:      97   (46%)
   Female:   112   (54%)

   Adults:   105   (50%)
   Children: 104   (50%)


PATIENTS BY CURRENT AGE
0-5:     8
6-12:   56
13-17:  40
18-35:  61
36-54:  32
> 55:   12

Notes: The youngest is 2, the oldest is 73


PATIENTS BY AGE AT DIAGNOSIS
0-5:    50
6-12:   63
13-17:  30
18-35:  37
36-54:  19
> 55:   10

Notes: Youngest diagnosis was 3 months, oldest was 71.  Since anyone diagnosed as an
adult is still an adult, the number of adults diagnosed as adults would be 66 (31% of the group).


PATIENTS BY YEARS SINCE INITIAL DIAGNOSIS
< 2:    57
2-5:    79
6-10:   35
11-20:  28
21-30:   5
31-40:   3
> 40:    2

Notes:  The most number of years since initial diagnosis is 47 (diagnosed at age 3). Don't 
panic - the descreasing numbers isn't an indication of mortality.  It simply means that the 
more recent the diagnosis, the more need for a support group.


PATIENTS BY COUNTRY
Australia:     5
Canada:       10
England:       5
India:         4
Ireland:       2
Israel:        1
New Zealand:   1
Poland:        1
Scotland:      2
Spain:         1
Sweden:        2
Switzerland:   1
USA:         159
Zimbabwe:      1
Unknown:      14


PATIENTS BY U.S. STATE
Alabama:         1
Arizona:         2
Arkansas:        2
California:     13
Colorado:        1
Connecticut:     2
Florida:        11
Georgia:         8
Hawaii:          1
Idaho:           1
Illinois:       11
Indiana:         5
Iowa:            2
Kansas:          3
Kentucky:        1
Louisiana:       1
Maryland:        5
Massachusetts:   8
Michigan:        5
Minnesota:       3
Mississippi:     2
Missouri:        3
Montana:         1
Nebraska:        2
Nevada:          3
New Jersey:      4
New York:        6
North Carolina:  5
Ohio:           11
Pennsylvania:   10
Rhode Island:    2
South Dakota:    1
Tennessee:       4
Texas:           7
Utah:            1
Vermont:         1
Virginia:        5
Washington:      2
West Virginia:   1
Wisconsin:       2
No patients from: Alaska,Delaware,Maine,New Hampshire,New Mexico,North Dakota,Oklahoma,
Oregon,South Carolina,Wyoming


PATIENTS BY CANADIAN PROVINCE
British Columbia: 1
Ontario:          8
Quebec:           1


CAREGIVER/RELATIVES STATISTICS
Mothers:   114
Fathers:    49
Wives:       8
Husbands:    5
Other female relatives:  13
Other male relatives:     5

Notes: In the case of parents, it is possible that both parents read the list but only one
name is on the email address so there are probably more readers than counted.