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Primary Immune Deficiency Diseases

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Information for Referring Physicians

NIAID established the Primary Immune Deficiency (PID) Clinic in 2007. The purpose of the clinic is to provide diagnosis and treatment recommendations for people 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 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 healthcare provider, will provide ongoing consultation to the NIAID team and appropriate follow-up care for your patient
  • A referral letter with an explanation of what you would like us to do for your patient at the National Institutes of Health (NIH)
  • A clinical summary of care (medical history and physical exam)
  • Pertinent lab results (including deficiencies in antibodies, T cells, phagocytes, or complement)
  • Past admission reports and discharge summaries
  • Pertinent progress notes
  • Copies of X-rays, CT scans and MRI’s (on a CD), and reports
  • Any pathology reports, with their slides and blocks
  • Your contact information (office address, phone number, email address)
  • Your patient’s contact information

Fax or send the information and records requested, including the CD, 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

After all materials have been received and your patient is accepted onto a protocol, there is a review meeting to schedule your patient based on the medical records. It can take six to eight weeks for an appointment from the time of the review meeting. Once a decision has been made, you and your patient will be notified within one week.

Once your patient has been accepted to the PID Clinic, we will send you a copy of the NIH Patient Handbook and a copy of the NIH Screening Consent for your patient. NIH does not cover the cost of the patient's first visit for lodging or travel but does cover subsequent visits. There is no cost for the evaluation or care received at NIH. If your patient needs financial assistance to make the initial trip to NIH, please let us know and a social worker will contact the family to see if they qualify for assistance.

NIH is a government facility and a government-issued photo identification card (ID) for adults (driver’s license, passport, or other official ID) is required for access onto the NIH campus. Parents need to remember to bring custody, adoption, or foster care papers with them to show that they are legally able to sign consents for their child’s care if custody of their child is shared or if they are not the biological parent.

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 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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Last Updated June 12, 2013