Information for Referring Physicians and Specialists About the NIAID PID Clinic
NIAID established the Primary Immune Deficiency (PID) Clinic in 2007. The purpose of the clinic is to provide diagnosis and treatment recommendations for individuals with primary immune deficiency diseases (PIDDs).
If you are currently treating a patient with a known or suspected PIDD, you are invited to consult with NIAID about your patient’s care through this new program. Clinicians who specialize in immune deficiency diseases will evaluate your patient’s medical history to determine if he or she might benefit from coming to the PID Clinic.
If your patient’s case is accepted for NIAID evaluation, you and your patient will be notified in writing of the decision. Your patient’s care, before and after a visit to the PID Clinic, will be a partnership between NIAID clinicians and you.
The following information is needed to determine your patient’s eligibility:
- Verification that you, the primary health-care provider, will provide ongoing consultation to the NIAID team and appropriate follow-up care for your patient
- A summary letter from you describing your patient’s medical history, including the following:
- When the condition was first observed and if it has been diagnosed
- Your patient’s current medical status
- Treatments and medications your patient has received in the past and their effects
- Additional medical complications your patient may have, such as food allergies, eczema, or autoimmune diseases, and treatments currently being administered
- Copies of reports and results of diagnostic tests—including evaluation of deficiencies in antibodies, T cells, phagocytes, or complement—along with CT scans, MRI results, and other imaging records
- Your contact information (office address, phone number, e-mail address)
- Your patient’s mailing address
Please mail the information and records requested above 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
After all materials have been received, a notification of receipt will be sent to you and your patient. NIAID review is expected to take about six to eight weeks. Once a decision has been made, you and your patient will be notified within one week. Please note that due to the nature of the evaluations made by NIAID clinicians, only one to two patients per week are currently being treated in the PID Clinic.
If your patient is eligible for participation in an existing NIAID clinical trial, he or she will be considered for that protocol. NIAID will provide you with additional information should your patient be accepted into an ongoing clinical study. Your patient’s eligibility for an existing NIAID clinical trial will not affect the prospect of his or her case being accepted by the NIAID PID Clinic.
Thank you for considering this opportunity to confer with NIAID about your patient. We appreciate your commitment to providing the best possible care for your patients and for giving them the opportunity to participate in the research efforts dedicated to advancing medical knowledge about PIDDs.
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