Visiting the NIAID Primary Immune Deficiency Clinic
The NIAID Primary Immune Deficiency (PID) Clinic is located at the Clinical Center on the National Institutes of Health campus in Bethesda, MD.
If you and your doctor determine that you would benefit from coming to the PID Clinic, follow the reference links below to content on this page for answers some basic questions about the clinic:
Before Your Visit
If you are interested in coming to the NIAID PID Clinic, discuss this option with your personal physician or specialist.
You must be referred to the NIAID PID Clinic by your physician. Your doctor will need to send the PID Clinic staff the following information:
- A summary letter describing your condition and current health status
- A list of treatments and medications you have taken
- Copies of your complete medical records
Referring physicians may download Information for Referring Physicians or Specialists or may contact Ashleigh Hussey (NED Web site), Christine Spalding (NED Web site), or Cathleen Frein (NED Web site), Nana-Akua Kwatemaa, or Sandra Maxwell for details about what information should be provided.for details about what information should be provided.
Letters and patient information should be sent to
Attn: C. Frien, National Institutes of Health
9000 Rockville Pike, Building 10, Room 12C103-4
Bethesda, MD 20892-1888
Phone: 301-402-1006
Fax: 301-480-5757
Our clinicians will notify your physician and you of their decision by mail in about six to eight weeks. If our clinicians determine that you would benefit from coming to the NIAID PID Clinic, you and your family will then be invited to come to the NIH Clinical Center in Bethesda, MD.
Expenses
Your visit to the clinic is free, so there is no need to worry if your insurance will cover your visit. However, your initial travel expenses will not be covered.
For those arriving from outside the DC metro area, some overnight housing is available on the NIH campus at the Children’s Inn. There are also many hotels and motels convenient to public transportation in the area. NIH does provide rate reimbursement for most local accommodations.
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During Your Visit
Plan to stay for at least one full day (approximately eight hours) of testing and evaluation. Since some diagnostic tests take two days to complete, you may need to return to the clinic for a half-day follow-up visit.
During your visit, you can expect the following:
- Initial discussion with a NIAID clinician (Day 1)
- Physical examination (Day 1)
- Diagnostic tests, including blood work, CT scan, or MRI, if needed (Day 1 to 2)
- Wrap-up session to review your test results, treatment recommendations, and diagnosis (Day 1 or 2)
For Parents
Of Special Interest to Parents (NIH Clinical Center)
Children and Clinical Studies (NHLBI)
Services Available at NIH
The NIH Clinical Center provides many services to its visitors, including counseling, a business center, and recreation. For details, visit Patient Services (NIH Clinical Center).
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Follow-up Care
Our staff is committed to helping you better manage your disease.
After your exam at the clinic is complete, you may be offered the opportunity to participate in an ongoing clinical trial at NIAID. Only our clinicians can determine your eligibility for participation.
Alternatively, you may be informed of primary immune deficiency disease studies for which you may be eligible at clinical centers outside of NIAID.
If you do come to the NIAID PID Clinic, our clinicians will make follow-up calls to your referring physician to check on your progress and to make future recommendations as your needs change.
Return to PID Clinic homepage
Primary Immune Deficiency Diseases homepage
Related Links
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