For your convenience, we have assembled welcome packets that may be helpful. The packets contain information about the NIH, as well as useful maps and schedules, and sample copies of the consent forms. Please look them over before you arrive.
- Welcome Packet for Adult Patients (pdf)
- Welcome Packet for Pediatric Patients (pdf)
- Welcome Packet for Families (both adult and pediatric patients) (pdf)
Documents Required for Visit
IF BELOW CRITERIA IS NOT MET YOU WILL NOT BE SEEN AT THE NIH
There are several documents that must be sent before your visit:
- Personal essay
- Completed questionnaires (see "Questionnaires" below)
- List of current medications
- Referral Letter From Physicians (Word - 55 KB) - addressed to Dr. Karel Pacak
- Providing a copy of all relevant medical reports, including:
- Relevant office notes and history and physical reports from your physicians
- Radiology reports and copies of imaging studies on CD
- Laboratory data, especially measurements of catecholamines and metanephrines
- A record of any treatments you may have had, i.e., chemotherapy, radiation, 131-I MIBG treatment
- Operative reports
- Pathology report(s), paraffin block(s) and pathology slides if surgery was performed
- Genetic test results (if performed)
Information on the personal essay and questionnaires is provided below. Please email the essay and the list of current medications to Karen T. Adams (email@example.com) and Victoria Martucci (firstname.lastname@example.org). Please mail CDs and Pathology slides to Karen T. Adams at:
Karen T. Adams
10 Center Drive Building 10
Bethesda, Maryland 20892
10 Center Drive, Building 10
Bethesda, MD 20892
These forms are NOT TO BE PRINTED but used as REFERENCE because they are updated frequently.
- Adult (PDF - 89 KB)
- Minor (PDF - 25 KB)
- Blood Test for Adult (PDF - 27 KB)
- Blood Test for Minor (PDF - 17 KB)
- Adult Consent For Child (PDF - 60 KB)
- Adult for Romidepsin (PDF - 67 KB)
- Normal Volunteer / Urine Collection (PDF - 36 KB)
Release of Medical Information to You or Your Physician
MEDICAL RECORD DEPARTMENT
10 Center Drive, Bldg 10 RM-1N205
Bethesda, MD 20892
Toll Free: 1-888-790-2133
If you wish to have your medical records released to you or your physician, please fill out the "Authorization for the Release of Medical Information" form. This form is unavailable online and can only be received by calling the Medical Record Department. It is your responsibility to fill this form out in order to have results released to you or your physician. Please call the Medical Record Department if you have any further questions.
The medical record department will not automatically send medical records to your physician if you are an outpatient. Please call them to update any recent information or new visits to the NIH.
Personal Health Essay
If you have a pheochromocytoma/paraganglioma lesion or have ever been diagnosed with pheochromocytoma you MUST complete this essay.
If you have not already written an essay for us (this essay only needs to be written once), this must be done before arriving to the NIH for evaluation. This needs to be a thorough chronological story about your health, from the very first signs and symptoms to the present. Please include all of the signs and symptoms you have had as well as all testing, scans, biochemistry and surgeries. Please include a history about all of your relatives and what they have died from if they are deceased. Also include what country(s) your parents and grand parents originated from.
When completed, please send to Victoria Martucci email@example.com
Please note: these are only to be completed by patients who have been accepted into our protocol and have a scheduled visit.
Please be sure to completely fill out all questionnaires; an incomplete questionnaire will result in cancellation of your schedule.
CAUTION: While completing the questionnaires on-line, the data MUST be saved at least every 5 minutes or all data will be lost!
All patients who have been diagnosed with a Pheochromocytoma/paraganglioma need to fill out the following two questionnaires:
1. First Presentation (when you were initially diagnosed and/or when the first Pheochromocytoma lesion appeared)
2. Current Issues (most recent issues)
If you are a pheochromcytoma patient: To access the questionnaires please go to this website for Clinical Studies on Pheochromocytoma Questionnaire.
If you are an SDHB family screening patient: To access the questionnaires please go to this website for SDHB family screening questionnaire.
Please inform Victoria Martucci (firstname.lastname@example.org (mailto: email@example.com)) when you have completed the questionnaire so that she may check it for accuracy. You may also contact her if you have any questions regarding the questionnaires.