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.
View a FAQ about the NIAID PID Clinic.
Before Your Visit
If you are interested in coming to the PID Clinic, discuss this option with your personal physician or specialist.
You must be referred to the 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
10 Center Drive
Building 10, Room 12C-103
Bethesda, MD 20892-1899
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 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.
During Your Visit
Plan to stay for at least one full day (approximately eight hours) of testing and evaluation. Some diagnostic tests take two 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 an 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.
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 ongoing clinical trials at NIAID. Only our clinicians can determine if you are eligible to participate.
Alternatively, you may be informed of primary immune deficiency diseases studies for which you may be eligible at clinical centers outside of NIAID.