September 25, 2015
USA – White House Honors IDF, New IDF Publications for Clinicians
White House Honors IDF President & Founder Marcia Boyle
On July 8, 2015, Marcia Boyle, Immune Deficiency Foundation (IDF) President & Founder, was one of nine individuals recognized by the White House as “Champions of Change” for Precision Medicine, which honors the work being done by patients, researchers, innovators, and advocates who are advancing our understanding of health and disease by harnessing data to take account individual differences in people’s genes, environments, and lifestyles to improve patients’ health. President Obama’s Precision Medicine Initiative was launched earlier this year to enable a new era of medicine through research and technology that empowers patients, researchers, and providers to work together toward development of individualized treatments. Marcia was chosen as a “Champion of Change” for her work at IDF, specifically IDF ePHR, the electronic personal health record for the primary immunodeficiency (PI) community, and PI CONNECT, the IDF Patient-Powered Research Network.
In 2014, IDF developed a revolutionary research network focused on PI—PI CONNECT, which empowers patients to participate and help transform research by consenting to share their data and their individual experiences. This is truly part of a national movement in the U.S. that will help researchers find answers, ultimately individualizing treatment and providing better outcomes for patients. IDF received a grant from Patient-Centered Outcomes Research Institute (PCORI) to develop PI CONNECT, which brings together patient-entered data from IDF ePHR with clinical data from the United States Immunodeficiency Network (USIDNET), the only national patient-consented registry for PI in the U.S. and to truly bring patients into the research conversation, patients can let their voices be heard in the PI CONNECT Research Forum. Bringing together this information and the patient voice holds great promise to provide researchers further insights about the diagnosis and treatment of PI, ultimately helping to improve quality of life for patients.
Read more about White House Champions of Change, PI CONNECT and IDF ePHR on IDF’s blog: http://primaryimmune.org/idf-ephr-pi-connect-part-of-national-movement-for-precision-medicine/.
IDF ePHR is sponsored in part by CSL Behring.
New IDF Publications for Clinicians
This year, IDF published two important educational publications for clinicians caring for patients with primary immunodeficiency diseases (PI).
Immune Deficiency Foundation Diagnostic & Clinical Care Guidelines for Primary Immunodeficiency Diseases
The Immune Deficiency Foundation Diagnostic & Clinical Care Guidelines for Primary Immunodeficiency Diseases has been one of the Foundation’s most popular publications, and the new third edition is now available. In partnership with expert immunologists, IDF developed these guidelines to enhance earlier diagnosis, improve health outcomes and increase access to specialized healthcare and optimal treatment for patients with PI. The original Guidelines was published in 2006, and minor revisions were made in the second edition in 2009. The third edition has been thoroughly reviewed and updated, and contains information on:
- Selected Primary Immunodeficiency Diseases
- Antibody Production Defects
- Cellular or Combined Defects
- Phagocytic Cell Immune Defects
- Mendelian Susceptibility to Mycobacterial Disease
- Complement Defects
- Genetic Counseling: General Considerations and Practical Aspects
- Health Insurance
- Glossary
It also includes a new section on Mendelian Susceptibility to Mycobacterial Disease and updated International Classification of Diseases (ICD) codes. These guidelines are not only intended to better educate physicians on the recognition, diagnosis and optimal treatment of these diseases, but they are also intended to provide patients with resources to deal more effectively with their physicians and with insurance providers. This publication was sponsored by Baxalta US Inc.
Clinical Focus on Primary Immunodeficiencies: Subcutaneous Immunoglobulin Replacement
IDF also published the new edition of Clinical Focus on Primary Immunodeficiencies: Subcutaneous Immunoglobulin Replacement. As use of subcutaneous immunoglobulin (SCIG) continues to grow in the U.S., more clinicians are using this delivery system for their patients and may not understand all the subtleties and importance of this method and the proper administration. There are also many questions about how to deal with side effects and reactions. Not only does this publication offer appropriate guidelines for SCIG, but it also answers commonly asked questions about SCIG and provides in-depth details about the many options for SCIG administration. This publication was funded by an unrestricted educational grant from CSL Behring.
You can download PDF versions or order copies at www.primaryimmune.org/idf-publications, or if you prefer contact IDF at 800-296-4433 or idf@primaryimmune.org to order hard copies.
