December 2024

CINC-NEWSLETTER DECEMBER 2024

2025 will be a special year for our organization. We will be celebrating our 5th year anniversary in January! We humbly believe that we have plenty to celebrate as we achieve this milestone. There is also a lot to do ahead and some pending bridges to cross, but with everyone’s participation we will be able to get there and continue to improve. My sincere gratitude to all of you who have devoted time, work, energy, and enthusiasm towards CINC in 2024. It was nice to see you in Banff in November.

IMPORTANT ANNOUNCEMENTS

  • Our new Chair of the Education Committee is Dr. Sneha Suresh. Thank you to Dr. Hugues Allard-Chamard for having chaired this committee all this time. Dr. Allard-Chamard will continue to be an active member of this committee and of CINC.
  • NEW! – Council Members
    • 3 highly engaged individuals in our organization were elected to become Council Members and be part of our Executive Board and support the Chair and the Board in advancing CINC’s mission and purpose with specific and important tasks ahead.
    • Welcome and congratulations to:
      • Dr. Jenny Garkaby
      • Dr. Tamar Rubin
      • Dr. Ori Scott
  • The newest version of our Terms of Reference will be distributed to all of you in the New Year.

NEW IN 2025 – Stay tuned and participate!

  • Led by Dr. Anne Pham Huy, Chair of the IEI Clinical Working Group:
    • New Project: Newborn Screening for SCID: the Canadian landscape
      • A multicenter study divided in 3 parts
        • Part 1: Newborn screening laboratory procedures pre-referral. To be led by Dr. Nicola Wright with Mithili Mudalige.
        • Part 2: Management and evaluation of positive NBS for SCID. To be led b Dr. Vy Kim with Benjamin Martinez.
        • Part 3: Outcome of positive NBS for SCID. To be led by Dr. Catherine Biggs.
      • “SCID stories” meetings to discuss interesting/challenging NBS for SCID cases and inform the direction of the study.
    • New cross-Canada Webinar (“Immunity Boosters”): covering practical topics in Pediatric and Adult Clinical Immunology specific/relevant to Canada.
  • CINC Clinical Practice Guidelines –  Led by our newest Council Members Drs. Jenny Garkaby and Ori Scott.
    • Creation of working groups for writing official CINC expert consensus guidelines and position statements for selected topics in the management of IEIs from the Canadian perspective in both Pediatric and Adult Immunology.
    • The first guidelines on the docket would revolve around management of STAT1 GOF, including topics such as surveillance guidelines, family member screening, and the judicial use of treatments such as anti-fungal agents, JAK inhibitors and HSCT. If you have experience looking after patients with STAT1 GOF and would like to contribute, please email garkabyj@mcmaster.ca  and we can provide further information.
    • Additionally, we are welcoming ideas for other guidelines which you feel would benefit the care of Canadian patients. Please reach out! These may include topics such as:
      • Management of severe EBV infection in EBV susceptibility syndromes.
      • Antimicrobial prophylaxis and vaccination.
      • Transition from Pediatric to adult immunology care.
      • Surveillance and Management of CVID complications (e.g. GLILD, enteropathy).
      • Long-term follow-up and surveillance following HSCT for IEI.
      • Athymia and thymic transplantation.
  • Continuous work and expansion of the Canadian Inborn Errors of Immunity National Registry (CIEINR) led by Drs. Beata Derfalvi and Nicola Wright.
    • Stay tuned for an upcoming call out to re-engage all the Immunology Centres across Canada to get everyone up and running with the Registry.
  • CINC/CSI Translational Immunology Working Group to be formally established.
  • Continuous improvements and updates in our website
  • Obtaining our Tax ID # to be able to launch our funding campaign. 
  • 2025 CINC Academic Meeting!

NEW COLLABORATION OPPORTUNITY

  • On behalf of Kristine Jeganathan, pediatrics resident from CHEO, and Dr. Jenny Garkaby: Project assessing the use of virus-specific T cells (VSTs) across Canada
    • Survey to gather valuable input from physicians across Canada. Their goal is to use this information to inform future recommendations for Health Canada, identify barriers and challenges to VST implementation, and guide the development of future initiatives nationwide.
    • Please fill out the survey and share with your colleagues and trainees to help them gather diverse perspectives. You can use the comment section within the form to share your suggestions:
    • https://docs.google.com/forms/d/e/1FAIpQLScJbf6A7KSzWcDaALTNjAQe9K8ALOahz6gzcaiyWSKxaDFpuQ/viewform

STILL RELEVANT

  • The prime editing clinical trial for p47 Chronic Granulomatous Disease is open at CHU-Ste. Justine. It is industry driven/sponsored (Prime Medicine | Delivering on the promise of Prime Editing). If you have any non-transplanted p47 CGD patients please reach out to Elie Haddad at elie.haddad@umontreal.ca
  •  Pharming is conducting a clinical trial in PIDs with immune dysregulation linked to altered PI3K signaling. It is in Phase II now with NIH as the sole site, where patients can be sent. The Phase III trial in adults and adolescents may include Canadian Sites.

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