1-800-659-1991
We are available through our HelpLine to answer questions, offer support and help you manage when you are caring for a loved one with a suspected or confirmed case of CJD. We are here to help in any way possible. We answer our phones Monday through Friday, 9am-5pm. Calls regarding patients will be returned evenings and weekends. Calls requesting general information will be returned the next business day.
Please call us to report your loved one's case, whether suspected or confirmed. One very important goal of the CJD Foundation is to keep confidential anecdotal information. We use this information to obtain an overview of U.S. cases and to look for similarities and/or trends to discuss with researchers. We never use names unless we first obtain your permission.
REPORT YOUR LOVED ONE'S ILLNESS
1-800-659-1991
Ask for Florence or Lori.
One very important goal of The CJD Foundation is to track ALL CASES of CJD both suspected and confirmed. We are the ONLY organization keeping anecdotal information and statistics. This information is referred to generally and can help find possible similarities and/or clusters. Please, help us to continue the collection of this important information. Call the Foundation HelpLine to discuss your experience. All information is confidential and NEVER shared without your written permission.
Some information needed includes:
The name of the patient
Patient's age
he patient's location, city
and state
How was the diagnosis made?
Would you recommend the
physician or physicians to
other families?
Progression of the illness
Your name and contact
information (If you do not
wish to receive any contact
from us, we will note
that on the file.)
Any problems or frustrations
you may have experienced
with the professionals
caring for your loved one or
in general.There are many
questions about the accuracy
of the statistics which
state that there is one CJD
case per million per
population. According to the
numbers reported to the
Centers for Disease Control
and Prevention, this appears
accurate. The CDC only
counts a case when the death
certificate lists
Creutzfeldt-Jakob Disease as
the primary cause of death.
The National Prion Disease
Pathology Surveillance
Center also helps the CDC
track the number of cases of
CJD in the United States.
The NPDPSC only includes
those cases which have
positive autopsy results. If
there was no autopsy or
brain biopsy, the case is
not included in these
statistics.
Please help us gather
accurate information about
this rare disease. Annually
we ask Congress to continue
its allocation for prion
disease research and your
information helps us in
building the case for
continued financial support
of research and
surveillance.
Insure your loved one is
included.
Finally, we at the
Foundation have experience
that cannot be found just
anywhere. We have seen and
felt the pain and suffering
caused by CJD. We have
information to share that
may be helpful to you and
your family. We have support
to offer.
QUESTIONNAIRE
For the past five years the
CJD Foundation has asked
family members to complete a
questionnaire about their
loved one. We are the only
repository for this
information.
Beginning in September of
2005, family members who
have completed the
questionnaire will also be
asked if the information
from it can be shared with
the National Prion Disease
Pathology Surveillance
Center (NPDPSC). They will
be compiling statistics
which, we hope, will provide
useful scientific and
demographic information. If
you agree, we will ask you
to sign a permission form.
Historically, the CJD
Foundation staff volunteer
who coordinates the
questionnaire found that
people often had a difficult
time writing about their
loved one's illness. More
often people found it easier
to answer the questions over
the phone which also
provides a mechanism for any
other information the family
wishes to share. Therefore,
we complete this
questionnaire via phone.
If you have previously
completed a questionnaire
and are willing to allow us
to share the information
with the NPDPSC, please
email us your permission to
help@cjdfoundation.org.