Introduction
CD3δ Severe Combined Immune Deficiency (SCID), is a devastating inborn error of immunity (IEI) caused by mutations in the CD3D gene resulting in absent T-cells. Due to a founder mutation, CD3δ-SCID is mostly observed in Mennonite communities residing in North and Latin America, with estimated incidence of 1:95,000 in Canada.
The study aimed to raise awareness of CD3δ-SCID and IEI using learning tools developed via international collaboration, an essential step to advance screening and management.
Methods
Educational materials about IEI and specifically CD3δ-SCID were created in English, Spanish, and German, tailored to resonate with the cultural background of the Mennonite community. Results Educational newspaper articles and infographics were published in the “Infomenonitas”, a Mennonite-owned news agency with monthly distributions in Chihuahua, and via “Die Mennonitische Post”, a Canadian-based editorial reaching subscribers from Mexico, Canada, the US, South America, and Europe.
Locally, information on the 10 warning signs of IEI, modified from the Jeffrey Modell Foundation, was provided to healthcare providers and patients in medical clinics serving Mennonite communities.
CD3δ-SCID materials have been shared with the Faculty of Medicine at the Autonomous University of Chihuahua, reaching over 15,000 students and staff through their social media accounts, and via collaboration with a digital news agency “La Paradoja” in Chihuahua.
Updated information about importance of early diagnosis and treatment for IEI, including CD3δ-SCID, have been reported in monthly academic sessions of the College of Pediatricians of Chihuahua. Special emphasis was given to the importance of building stronger links within the community to maximize treatment adherence.
Conclusion
International collaboration is crucial to alleviate the burden of CD3δ-SCID and other IEIs by increasing awareness and access to diagnosis and management. In the future, we will assess the impact of the educational campaign. This work has been initiated with development of gene therapy for CD3δ-SCID.