NATIONAL PRION DISEASE PATHOLOGY SURVEILLANCE CENTER …

 NATIONAL PRION DISEASE PATHOLOGY SURVEILLANCE CENTER
                       Brain Only Autopsy Informed Consent
I do hereby state that I am the nearest relative of, or I have power of attorney for, the
patient and therefore am legally entitled to grant permission for the performance of a
brain-only autopsy on this patient as arranged by the National Prion Disease Pathology
Surveillance Center (NPDPSC). The samples from this procedure are to be submitted to
the NPDPSC for further scientific study and diagnostic purposes. I respectfully request
the pathologist performing the autopsy to submit all samples to NPDPSC and that these
samples be sent within a month of the autopsy to facilitate a timely and accurate
diagnosis.
I further authorize NPDPSC to obtain the patient's medical records from the physicians
listed below.
I understand that the results of this research will be released to the physicians listed on
the consent, as the NPDPSC is not authorized to release information directly to family
members.

SIGNED:

PRINTED NAME:

TODAY'S DATE:

PHONE NUMBER:

RELATIONSHIP TO PATIENT:

PATIENT NAME:
 NATIONAL PRION DISEASE PATHOLOGY SURVEILLANCE CENTER
     Informed Consent for Collection of Temporal Muscle and Pituitary
We are now collecting muscle samples for cases of suspected CJD to be stored for future
research studies. With your permission, we would like to collect a small sample of
muscle and the pituitary as a part of the autopsy procedure. Both are located in the head
and can be removed during the autopsy without any disfigurement or additional incisions.
Because this is a research project, you will not receive any reports or diagnosis based on
the muscle sample. Your decision to participate or not to participate in this research will
not affect the diagnosis in any way.
If you would like more information on this project before making a decision, please
contact our autopsy coordination team at 216-368-0587.
Please check the box below indicating whether you give consent for collection of muscle
tissue as a part of the autopsy. Again, please remember that this is an independent
research project and will not affect your ability to obtain a diagnosis.

       Yes, I give permission for the collection of temporal muscle and pituitary as a part
       of the brain only autopsy coordinated by NPDPSC.
       No, I do not give permission for the collection of temporal muscle and pituitary.

SIGNED:

PRINTED NAME:

TODAY'S DATE:

PHONE NUMBER:

RELATIONSHIP TO PATIENT:

PATIENT NAME:
PATIENT INFORMATION

Date of birth:

Race:                                                                     Male   Female

City/State of residence:

In what month and year did the patient start showing signs of CJD?

Is the patient deceased?
        Yes ­ If YES, please fill out the information in the box below.
        No


Date of Death                                  Time of Death

City/State of Death


Is the patient married?
        Yes ­ What is his/her spouse's name?
        No

Where is the patient currently located?

What is the phone number?

What hospitals was the patient seen at?



Does the patient have a known history of foreign travel?
       Yes: Where?
       No
Does the patient have a known history of hunting or eating wild game?
       Yes: In what state?
       No
Does the patient have a family history of CJD or early onset dementia?
       Yes ­ Please describe:
       No
Did the patient donate blood?
       Yes ­ In what year and city:
       No
PHYSICIAN INFORMATION

Physician name                   Specialty             Phone             Fax (if available)




CONTACT INFORMATION

Who is the primary family contact?

What is their relationship to the patient?

Main phone:                                  Alternate phone:

Has the family selected a funeral home/mortuary/crematory?
       Yes ­ If YES, please fill out the information in the box below.
       No


Name of facility:

Contact person:

City and state:

Phone number:



Name of the person who completed this form:

Phone number (if not noted above):