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Educational Books

In addition to the 10 Warning Signs Posters we have produced the following educational materials to inform the public about Primary Immunodeficiency.

• Immune System Posters

  An educational illustration of how our immune system works.

                 

                 

                 

  

• Informational Brochures

  A pocket-sized guide to PI.

            

  A detailed and informative guide to PI.

          

  As well as in collaboration with our pharmaceutical partners!

     

           

  

• Why Immunology?

  The Importance of the Immune System!

  

• Funny Immunology To Save Lives!

  English
              
              

  Spanish
              
              

  Portuguese
              
              

Physician Education Materials

The clinical presentation of PI can be diverse. However, there are clinical findings at the level of different organs and systems requiring PI suspicion; these findings must be quickly recognized by specialty care physicians:

La presentación clínica de las IDP puede ser muy variada. Sin embargo, existen hallazgos clínicos a nivel de diferentes órganos y sistemas que obligan a sospechar IDP; estos hallazgos deben ser rápidamente reconocidos por los médicos especialistas:

• Interesting Scientific Research

  • The FILL (Following infants with low lymphocytes) study developed as an offshoot and direct result of newborn screening for SCID and T cell lymphopenia (NBS SCID) in the United States.  This study intends to enroll infants who are initially identified during newborn screening (abnormal TREC result on SCID screening) and confirmed by a physician to have lymphopenia.  The study will collect data on 200 infants who are enrolled by April 1, 2018.  The FILL database was created and is maintained by the USIDNET, through a pilot grant provided by the Jeffrey Modell Foundation to the Clinical Immunology Society (CIS).   Patient data can be entered into the FILL Database either by enrollment through an USIDNET center, or through direct physician referral to USIDNET.  All patients enrolled in the study have to be consented through an IRB protocol.

    We strongly urge you to enroll your patients with T cell lymphopenia identified by SCID newborn screening in the FILL study so that there is evidence-based data to better understand, follow and manage infants with lymphopenia.

    

  • Clinical Trial Opportunity for Patients with Chronic Mucocutaneous Candidiasis
    Chronic Mucocutaneous Candidiasis often results from an underlying immune deficiency that leads to abnormalities in a person’s control of fungal infections such as candida.  Investigators at NIAID are seeking people with chronic mucocutaneous candidiasis (oropharyngeal, esophageal or vulvovaginal candidiasis) that are refractory or intolerant to standard non-intravenous therapies to participate in a clinical research trial.  For additional information please contact Dr. Alexandra Freeman (freemaal@mail.nih.gov) or see https://clinicaltrials.gov/ct2/show/NCT02629419.
    
    
  • Monozygotic twins discordant for CVID reveal impaired DNA demethylation during naïve-to-memory B-cell transition
    
    
  • 'JEDI' technology awakens new understanding of how immune system works
• Educational Materials for Physicians and Their Patients

  Saving Children with Agammaglobulinemia (Salvando A Los Niños Con Agammaglobulinemia)
  www.savingagammaglobulinemiapatients.org

• Clinical Trials, Physician Research Opportunities

  • The FILL (Following infants with low lymphocytes) study developed as an offshoot and direct result of newborn screening for SCID and T cell lymphopenia (NBS SCID) in the United States.  This study intends to enroll infants who are initially identified during newborn screening (abnormal TREC result on SCID screening) and confirmed by a physician to have lymphopenia.  The study will collect data on 200 infants who are enrolled by April 1, 2018. The FILL database was created and is maintained by the USIDNET, through a pilot grant provided by the Jeffrey Modell Foundation to the Clinical Immunology Society (CIS).   Patient data can be entered into the FILL Database either by enrollment through an USIDNET center, or through direct physician referral to USIDNET.  All patients enrolled in the study have to be consented through an IRB protocol.

    We strongly urge you to enroll your patients with T cell lymphopenia identified by SCID newborn screening in the FILL study so that there is evidence-based data to better understand, follow and manage infants with lymphopenia.

    

  • Clinical Trial Opportunity for Patients with Chronic Mucocutaneous Candidiasis
    Chronic Mucocutaneous Candidiasis often results from an underlying immune deficiency that leads to abnormalities in a person’s control of fungal infections such as candida.  Investigators at NIAID are seeking people with chronic mucocutaneous candidiasis (oropharyngeal, esophageal or vulvovaginal candidiasis) that are refractory or intolerant to standard non-intravenous therapies to participate in a clinical research trial.  For additional information please contact Dr. Alexandra Freeman (freemaal@mail.nih.gov) or see https://clinicaltrials.gov/ct2/show/NCT02629419.
• Funny Immunology To Save Lives!

  English
              
              

  Spanish
              
              

  Portuguese
              
              

• Diagnostic Algorithm for Specialty Care Physicians