Mother and daughter enjoying outdoor activity

Primary Immunodeficiency Disease

Primary immunodeficiency disease (PID) refers to a group of mostly inherited conditions that involve impairment of the immune system and require ongoing management.1

Currently, more than 550 different genetic defects of PID have been identified, often presenting with hallmark recurrent and unusual infections.1,2 Also, some patients develop a higher susceptibility to noninfectious complications such as malignancies, autoimmune diseases and allergies.3

Human anatomy educational diagram with vascular system highlight

Epidemiology

The actual prevalence remains unclear, but estimates range from 390,000 to 6 million people living with PID worldwide.4 In the U.S. alone, the prevalance is thought to be as high as 50.5 cases per 100,000 people.5 Although severe forms are more frequent in infancy and early childhood, the disease may not manifest until later in life in some cases.6

Pathophysiology

PIDs are broadly classified, but antibody deficiencies represent the most common form and are characterized by impaired antibody-producing components. In the U.S., antibody deficiencies account for more than half of all PID cases (63.4%).7 Due to their unique role in antibody production, defects in B cell development and function are the main cause of antibody deficiencies. However, defects in T cells and other immune cell types that contribute to B cell activity may also be present.8

Diagnosis

PIDs are significantly underreported, and estimates suggest that 70-90% of patients are undiagnosed worldwide, largely because it is not top of mind.6 According to a U.S. survey, the average time from symptom onset to diagnosis of all types of PID was 25 years based on 977 respondents.9 Diagnosing an antibody production deficit relies on a thorough medical and family history, physical examination and should be supplemented with diagnostic screening tests (e.g. complete blood count with differential white blood cell count, serum antibody levels, vaccine response) to help identify specific PID types.1,6

Navigating PID

The clinical presentation of PIDs is highly variable; however, recurrent sinopulmonary and gastrointestinal infections are particularly common.1,8,10,11 Therefore, the management approach is highly dependent on the type of defect and is largely focused on the prevention and treatment of infections, while more severe cases may require hematopoietic stem cell transplants.1,8 The mainstay treatment for primary B-cell immunodeficiencies, is replacement of serum IgG with either intravenous immunoglobulin (IVIG) or subcutaneous immunoglobulin (SCIG).1,7 If left untreated, PID can lead to hospitalizations, frequent days missed from work/school, prolonged antibiotic use, permanent organ damage or even death.10,12,13

Scientific Congresses and Resources

This is not intended to be a comprehensive resource of all congresses and congress materials across therapeutic and disease areas. Congress materials may include information about investigational use(s) of compounds/products that are not approved for use by the U.S. Food and Drug Administration (FDA) and/or are inconsistent with the Prescribing Information. Takeda does not recommend the use of any Takeda product beyond the approved labeling. Any decisions regarding the usage of a Takeda product beyond the approved labeling are left to the discretion of the healthcare professional. Takeda makes no representations about whether investigational compounds or unapproved uses will be approved by the FDA.

American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM), 2025

October 29 - November 1, 2025 | Link to Event

Annual meeting dedicated to the advancement of neuromuscular, musculoskeletal, and electrodiagnostic medicine.

American College of Allergy, Asthma & Immunology (ACAAI), 2025

November 6 - 10, 2025 | Link to Event

Global meeting featuring thought leaders from around the world focused on advancing patient care in allergy and immunology.

Annual Meeting American Academy of Allergy Asthma and Immunology (AAAAI), 2026

February 27 - March 2, 2026 | Link to Event

Premier global educational event for allergists and immunologists, with thousands of attendees each year, discussing allergies, asthma, and immune deficiency disorders.

American Academy of Neurology (AAN), 2026

April 18 - 22, 2026 | Link to Event

Each year, the American Academy of Neurology's Annual Meeting offers a robust lineup of diverse learning opportunities covering nearly every topic and subspecialty, helping you stay up to date on the latest trusted science and essential education.

National Home Infusion Association (NHIA), 2026

April 18 - 22, 2026 | Link to Event

Brings together home and alternate site infusion professionals for four days of networking, education, and exhibits. The expo features companies displaying the latest products and services supporting the industry.

Immunoglobulin National Society (IgNS), 2025

October 16 - 19, 2025

National conference of IgNS bringing together professionals and practitioners from all disciplines and clinical specialties to advance Ig therapy practice, while providing networking and comprehensive education opportunities.

Hereditary Angioedema National Summit (HAEA), 2025

July 10 - 13, 2025

This event brings together over 1200 HAE community members, including families, caregivers, healthcare professionals, and pharmaceutical representatives.

Takhzyro® (lanadelumab-flyo)

  • Longitudinal Trend in Attack Outcomes in Patients With Hereditary Angioedema Receiving Long-term Prophylaxis with Lanadelumab: An Observational Study
  • Physician-Reported Attack Rates and Attack Characteristics Among Patients With Hereditary Angioedema Who Extended Dosing With Lanadelumab: An EMPOWER Study Analysis
  • Treatment Outcomes With Lanadelumab by Baseline Hereditary Angioedema Activity: EMPOWER/ENABLE Analysis

Eastern Allergy Conference (EAC), 2025

May 29 - June 1, 2025

Regional annual conference discussing the most current information from top experts in allergy, asthma, and immunology.

Takhzyro® (lanadelumab-flyo)

  • Lanadelumab’s Sustained Effectiveness and Safety for Hereditary Angioedema Long-Term Prophylaxis in Patients From Puerto Rico: Final Results From the EMPOWER Study
  • Understanding the Impact of Long-Term Prophylaxis Switches for Patients With Hereditary Angioedema.

American Thoracic Society (ATS), 2025

May 16 - 21, 2025

International conference showcasing the latest advances in pulmonary disease, critical illness, and sleep disorders for scientists and clinicians at all stages of their careers.

Glassia® [Alpha1- Proteinase Inhibitor (Human)]

  • Application of an Artificial Intelligence Model to Detect Alpha-1 Antitrypsin Deficiency: Characterizing the Study Population
  • Application of an Artificial Intelligence Model to Detect Alpha-1 Antitrypsin Deficiency: Model Performance

Clinical Immunology Society (CIS), 2025

May 1 - 4, 2025

Annual meeting with the goal of providing a stimulating forum with presentations and discussions on the latest advances in clinical immunology, including primary immunodeficiencies and immune dysregulatory diseases.

American Academy of Neurology (AAN), 2025

April 5 - 9, 2025

Annual meeting in neurology promoting high quality patient-centric care in a variety of topics and specialties through various learning formats.

  • Real-World Characteristics and Disease Management for a Virtual Longitudinal Cohort of Patients with Chronic Inflammatory Demyelinating Polyneuropathy

Academy of Managed Care Pharmacy (AMCP), 2025

March 31 - April 3, 2025

Large assembly of pharmacy and healthcare professionals dedicated to the issues of managed care pharmacy, offering immersive education sessions and keynote presentations.

  • Epidemiology, Patient Characteristics, Real-World Treatment Patterns, and Outcomes for Patient with Multifocal Motor Neuropathy (MMN)
  • Disease Severity and Healthcare Resource Utilization for Chronic Inflammatory Demyelinating Polyradiculoneuropathy and Multifocal Motor Neuropathy: Results from an Integrated Database

National Home Infusion Association (NHIA), 2025

March 29 - April 2, 2025

Annual conference ideal for infusion professionals or those seeking opportunities in the industry to come together and explore the latest trends in offering home-based services. 

Annual Meeting American Academy of Allergy Asthma and Immunology (AAAAI), 2025

February 28 - March 3, 2025

Premier global educational event for allergists and immunologists, with thousands of attendees each year, discussing allergies, asthma, and immune deficiency disorders.

Takhzyro® (lanadelumab-flyo)

  • Real-world Episodes of Long-term Prophylaxis for Hereditary Angioedema: A Descriptive Study Using Data From the Consortium of Independent Immunology Clinics
  • Longitudinal Study of Adult Patients With Hereditary Angioedema Receiving Long-term Prophylaxis for 3 Years or Longer With Lanadelumab: Baseline Findings
  • Understanding the Impact of Long-term Prophylaxis Switches for Patients With Hereditary Angioedema

Western Society of Allergy, Asthma and Immunology (WSAAI), 2025

February 9 - 13, 2025

Annual scientific session uniting allergists, immunologists, nurses, and physician assistants aimed at maintaining the highest standard of practice in allergy care.

Takhzyro® (lanadelumab-flyo)

  • Longitudinal Trend in Attack Outcomes in Patients With Hereditary Angioedema Receiving Long-term Prophylaxis With Lanadelumab: An Observational Study
  • Understanding the Impact of Long-term Prophylaxis Treatment Switches on Hereditary Angioedema Attack Characteristics

Cuvitru®[Immune Globulin Subcutaneous (Human)] 20% Solution

  • Clinical characteristics, treatment patterns, and healthcare resource utilization (HCRU) of patients with primary immunodeficiency diseases receiving immunoglobulin subcutaneous (human), 20% solution (Cuvitru) in a large US payer database

International Congress on Neuromuscular Diseases (ICNMD), 2024

October 25 - 29, 2024

This international congress offers attendees an updated view on neuromuscular disorders and networking opportunities to increase their international experience and collaborations.

American College of Allergy, Asthma & Immunology (ACAAI), 2024

October 24 - 28, 2024

Global meeting featuring thought leaders from around the world focused on advancing patient care in allergy and immunology.

Takhzyro® (lanadelumab-flyo)

  • Longitudinal Survey of Adult Patients with Hereditary Angioedema Receiving Long-Term Prophylaxis with Lanadelumab
  • Social Determinants of Health in Hereditary Angioedema and their Impact on Patient Outcomes

Medications

This resource provides information on Takeda medications available in the Primary Immunodeficiency Disease category and is not intended to represent a complete list of therapeutic options.

Cuvitru®

[Immune Globulin Subcutaneous (Human)] 20%

Gammagard Liquid®

[Immune Globulin Infusion (Human)] 10%

Gammagard Liquid ERC®

[Immune Globulin Infusion (Human)] ≤2 μg/mL IgA in a 10% Solution

Gammagard® S/D

[Immune Globulin Intravenous (Human)] IgA less than 1 μg/mL in a 5% Solution

HyQvia®

[Immune Globulin Infusion (Human), 10% with Recombinant Human Hyaluronidase]

Videos

Watch videos focused on Primary Immunodeficiency Disease [PID (IEI)].

PID (IEI) Mechanism of Disease Overview

Learn about the cause of Primary Immunodeficiency Disease (PID)/Inborn Errors of Immunity (IEI) in this animated video.

 

Additional Resources

Find materials to help foster a deeper understanding of Primary Immunodeficiency Disease [PID (IEI)].

Health Disparities in PID (IEI) Fact Sheet

An overview of the overall health disparities and their impact on PID (IEI) patients.

PID (IEI) Diagnosis Fact Sheet

An overview of PID (IEI) diagnosis including testing, impact of delayed diagnosis, and co-ordinating care.

PID (IEI) Disease Awareness Fact Sheet

An overview of PID (IEI) epidemiology, pathophysiology, signs and symptoms, and burden of disease.

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