Every Voice Counts

Take a few moments and get connected

By completing this form, you are playing a vital role in maintaining the largest database of individuals whose lives are affected by primary immunodeficiency diseases. Your information enables IDF to perform valuable surveys that have been, and will continue to be instrumental in advancing the needs of the primary immunodeficiency community. Your name and contact information will not be shared with other organizations and this information will be kept strictly confidential.

Being a part of IDF has wonderful benefits for you! We will keep you informed of the latest news regarding treatment, education, recalls, programs and other timely issues for those living with primary immunodeficiencies, via the Primary Immune Tribune monthly e-newsletter, and the IDF ADVOCATE printed newsletter.

So what are you waiting for? Please take a few moments and fill in the following information.

An asterisk(*) identifies each required field.

I am*: New to IDF Updating existing information I am*:  (check all that apply)  Physician  Nurse  Other:    First Name*: Last Name*: Address 1*: Address 2: City*: State*: Zip Code*: Country*: Telephone: E-mail: Please indicate your specialty:   Allergy Immunology   Infectious Disease   Chest Medicine   Internal Medicine   ENT   Pediatrics   Family Practice   Rheumatology   Hematology   Other:   Do you follow any patients with a Primary Immunodeficiency Disease (PIDD)?   Yes   No If yes, approximately how many patients do you follow that have a PIDD?   patients Please tell us about the PIDD patients you follow: Diagnosis Do you follow any patient with any of the following diagnoses? Percent of these patients treated with Immunoglobulin replacement therapy    Agammaglobulinemia (XLA)  No  Yes  %  Ataxia Telangiectasia  No  Yes  %  Chronic Granulomatous Disease  No  Yes  %  Common Variable Immunodeficiency  No  Yes  %  Complement Deficiency  No  Yes  %  DiGeorge Syndrome  No  Yes  %  Hereditary Angiodema  No  Yes  %  Hyper IgM Syndrome  No  Yes  %  IgG Subclass Deficiency  No  Yes  %  Severe Combined Immunodeficiency  No  Yes  %  Severe Congenital Neutropenia  No  Yes  %  Specific Antibody Deficiency  No  Yes  %  Wiskott-Aldrich Syndrome  No  Yes  %  Other    No  Yes  % For security purposes, please enter the special code:

If you currently manage patients with a Primary Immunodeficiency Disease, IDF encourages you to please take a moment to read about the United States Immunodeficiency Network (USIDNET)

Working under a grant from The National Institutes of Health and National Institute of Allergy and Infectious Diseases (NIH/NIAID), the United States Immunodeficiency Network (USIDNET) is developing a national registry of patients with primary immunodeficiency diseases for the purposes of:

• Providing a minimum estimate of the prevalence of each disorder in the United States
• Promoting collaborative research
• Learning more about phenotypic variations
• Determining the natural history of these genetic disorders
• Providing a comprehensive clinical picture of each disorder
• Learning the effects of treatment protocols
• Evaluating quality of life measures in this patient population
• Providing a resource for clinical and laboratory research

If you would like to learn more about the Registry, please visit www.usidnet.org.