White Paper Challenge

New for 2022, IDF sponsored a White Paper Challenge to address issues related to primary immunodeficiency and health access, including disparities in diagnosis and treatment and expanding awareness of these rare disorders in communities of color.

Geographic Scope: United States

Focus Areas:

• Health access and primary immunodeficiency
• Disparities in diagnosis and treatment
• Awareness of rare disorders in communities of color
• Specific focus areas demonstrated by 2022 recipients:
  • Diagnostic disparities in early-onset inflammatory bowel disease (VEO-IBD) as a PI symptom in children of color
  • Systemic disparities in PI diagnosis in adults across racial/ethnic groups
  • Spanish-language resources and awareness in Latino/a/x communities

Award Details:

• Three awardees selected for 2022 competition
• Formal white paper due to IDF by end of 2022

2022 Award Recipients:

1. Dr. Amanda Salih (Texas Children's Hospital/Baylor College of Medicine) - Using machine learning to combat delayed diagnosis of VEO-IBD in children of color. Her preliminary analysis showed diagnostic disparities with average time-to-diagnosis for children of color being more than twice that of white children.
2. Dr. David Sanchez (Mount Sinai School of Medicine) - Determining if there is systemic disparity in PI diagnosis in adults using ICD codes across New York State and planning targeted education and consultation hotline for primary care providers in communities of color.
3. Dr. Vivian Hernandez-Trujillo (Allergy and Immunology Care Center of South Florida) - Developing Spanish-language resources on primary immunodeficiency to distribute at festivals and community events in South Florida.