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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 CJD diagnosis. 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 diagnosis, whether suspected or confirmed. One very important goal of the CJD Foundation is to collect confidential anecdotal information to be used to help with surveillance of prion diseases in the United States. We look for changes in the number of cases, geographical locations and other areas of concern. We never use names unless we have obtained your permission.
REPORT YOUR LOVED ONE'S ILLNESS
Ask for Debbie 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 this anecdotal information and statistics. This information is referred to generally and can be of help finding 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
- The 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 but there are still states where cases of CJD are not reportable or situations where patients go undiagnosed or misdiagnosed. 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 build the case for continued financial support for 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.
For the past several 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.
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 firstname.lastname@example.org.
Please note that the completion of a questionnaire is completely voluntary.