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Primary Immune Deficiency Diseases

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Visiting the NIAID Primary Immune Deficiency Clinic

photo of a playground
Aerial view of NIH Mark O. Hatfield Clinical Research Center.
Credit: NIH

The NIAID Primary Immune Deficiency (PID) Clinic is located at the National Institutes of Health (NIH) Clinical Center.

If you and your doctor determine that you would benefit from coming to the PID Clinic, click on the links below for answers to 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 doctor. 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 medicines you have taken
  • Copies of your complete medical records

Referring physicians should contact Cathleen Frein or Mary Garofalo for details about what information they should provide.

Fax or send the information and records requested by FedEx* to

C. Frein, National Institutes of Health
9000 Rockville Pike
Building 10, Room 12C-103, MSC 1899
Bethesda, MD 20892
Phone: 866–857–5274 or 301–402–1006
Fax: 301–451–5680
*FedEx account number available upon request to freinc@mail.nih.gov

Our clinicians will notify your doctor and you of their decision by mail in about 6 to 8 weeks. If our clinicians determine that you would benefit from coming to the NIAID PID Clinic, you and your family will then be invited. Our clinical staff will send you a copy of the NIH Patient Handbook (PDF) and a copy of the NIH Screening Consent prior to your visit to NIH.

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 Washington, 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

aerial photo of the clinical center
 

Plan to stay for at least one full day (approximately 8 hours) of testing and evaluation. Some diagnostic tests take 2 days to complete, so 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 (National Heart, Lung and Blood Institute)

Services Available at NIH

The NIH Clinical Center provides many services to its visitors, including counseling, a business center, and recreation. For details, visit the NIH Clinical Center Patient Services website.

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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 if you are eligible to participate.

Alternatively, you may be informed of PIDD 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 doctor to check on your progress and to make future recommendations as your needs change.

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Last Updated July 17, 2012