Patient Surveys

IDF National Patient Survey Reports (1995, 2002, 2007)

These surveys are based on all persons known to IDF as having a diagnosis of one of the more than 400 different primary immunodeficiency diseases. Although these surveys are not probability samples from which we can make population estimates within known limits of sampling error, they provide the most representative samples currently available of patients with a rare disease.

• Primary Immune Deficiency Diseases in America: The First National Survey of Patients and Specialists (1995)

• Primary Immune Deficiency Diseases in America: The Second National Survey of Patients (2002)

• Primary Immune Deficiency Diseases in America: The Third National Survey of Patients (2007)

Treatment Surveys

IDF National Patient Treatment Survey Reports (2002, 2008, 2013)

Although the medical recognition of primary immunodeficiency diseases had existed for almost 50 years, at the time of the first IDF national patient treatment survey in 1997, there was no current, comprehensive portrait of the patient with primary immunodeficiency disease, their medical condition and their treatment. Immunoglobulin replacement therapy is medically indicated for some, but not all primary immunodeficiency diseases. The IDF treatment surveys are based on persons known to IDF as individuals who use immunoglobulin replacement therapy in the treatment of their primary immunodeficiency. While these IDF treatment surveys are not probability samples from which we can make population estimates within known limits of sampling error, they provide the most representative samples currently available of patients with a rare disease from which we can examine treatment experiences.

• Treatment Experiences and Preferences Among Patients With Primary Immunodeficiency Diseases: National Survey of Patients (2013)

• Treatment Experiences and Preferences Among Patients With Primary Immunodeficiency Diseases: National Survey of Patients (2008)

• Treatment Experiences and Preferences of Patients with Primary Immune Deficiency Diseases: First National Survey (2003)

IVIG Access Surveys

In 2006 the Immune Deficiency Foundation (IDF) conducted three different national surveys in order to quantify reports from patients and healthcare providers that Medicare reimbursement for intravenous immunoglobulin (IVIG) was insufficient. These surveys included a national patient survey of patients from the IDF data base, a survey of hospital pharmacists, and a national survey of immunologists conducted with the American Academy of Asthma, Allergy and Immunology (AAAAI). The results from these surveys indicated that Medicare patients had more difficulty obtaining IVIG infusions and suffered more health problems than patients with private insurance.

• IDF and AAAAI Immunologist Survey Regarding IVIG Treatment (2007)

• Hospital Usage of Intravenous Immunoglobulin: A 2006 Survey of Pharmacy Directors

• Assessing the Impact of Changes in Reimbursement Regulations and Product Availability On Access to Intravenous Gammaglobulin Treatment Among Primary Immune Deficiency Patients (2006)

Journal Articles based on IDF Survey Data

IDF survey data is often cited in medical journals, government sponsored reports and by the media. IDF survey data has also been the focus of articles that appeared in peer reviewed journals.

• Comparative effectiveness research in the United States and primary immunodeficiency diseases

• Early vs. Delayed Diagnosis of Severe Combined Immunodeficiency: A Family Perspective Survey (2010)

• Population Prevalence of Diagnosed Primary Immunodeficiency Diseases in the United States (2007)

• Impact of Intravenous Immunoglobulin (IVIG) Treatment Among Patients with Primary Immunodeficiency Diseases (2008)

• Use of Intravenous Immunoglobulin and Adjunctive Therapies in the Treatment of Primary Immunodeficiencies

If you would like more information, please call IDF’s Vice President of Research at 800.296.4433 or idfresearch@primaryimmune.org