News

CHAEN 2024 Research Fellowship

The Canadian Hereditary Angioedema Network (CHAEN) is pleased to announce that it will be offering a $50,000 annual Research Fellowship.

The objective CHAEN Research Fellowship in HAE is to:

• Increase Canadian research capacity in the area of HAE,
  
• Support the research career of promising researchers, and
  
• Produce high-quality research in the diagnosis, treatment and management of HAE

The Fellowship is for one year, non-renewable. Fellowships must commence within six (6) months of receiving the Award.

Applications must be submitted by October 9, 2024, at 11:59 pm in the time zone of the applicant.

The applicant must be a postdoctoral fellow or in a research-based fellowship (Ph.D., MD or equivalent) and must currently be undertaking research training.

The award must be held at a Canadian university or research institute defined as an eligible institution by CIHR. Please note that Residents currently completing their Allergy and Clinical Immunology training are not eligible to hold this Fellowship.

Get further information and the application form.

The adjudication is being conducted by the Canadian Allergy, Asthma, and Immunology Foundation (CAAIF).

Please forward this to any interested parties.

CHAEN 2024 Chair’s Annual Report

It is my pleasure to deliver the eleventh Chair's annual report since CHAEN was incorporated on March 25, 2013. It has been an honour to serve as Chair of CHAEN and I wish to thank all the volunteers who have contributed to CHAEN over the years and are responsible for its successes. I would also like to give special thanks to our Board of Directors who have contributed their time to CHAEN to help improve the care of patients with HAE. Canada leads the world in providing access to modern HAE treatments to patients and I am confident this is a result of the hard work all members of CHAEN have done to remain current and provide excellent care. I would also like to acknowledge and thank our committee volunteers and our Executive Director, Peter Waite, and his staff at the CHAEN office. CHAEN continues to grow and now has 64 members.

Our Research Committee, chaired by Dr Susan Waserman, continues to be active and is committed to making progress on several fronts including: a survey of the diagnosis of hereditary angioedema with C1 inhibitor deficiency; pregnancy and HAE, a multicenter chart review; genetics of HAEn; comorbidities in HAE patients; and the impact of Covid-19 on Canadian HAE patients.

Understanding the importance of early career development and the need for committed research in HAE, CHAEN has established a fellowship award in the amount of $50,000.  Nominees were independently adjudicated with the assistance of the Canadian Allergy, Asthma, and Immunology Foundation and in 2023 the Fellowship was awarded to Dr Natasha Correa.  Dr Correa is finalizing the results of a physician survey that has both a quantitative and qualitative component. I understand that many members have and are taking part in this important project, and I thank you.

Additionally, the Allergy and Clinical Immunology Fellow-in-Training three-week observer elective at the US HAEA Angioedema Center at the University of California, San Diego was restarted last year. Dr. Arun Dhir completed it in 2023 and Dr Natasha Correa was also accepted but has deferred due to maternity leave. The elective will be offered again this year.

CHAEN currently receives support from BioCryst, CSL Behring and Takeda for our activities. I wish to thank the sponsors specifically. Their ongoing support of CHAEN has enabled us to carry out the work we do to achieve better care for patients with HAE. Without such support we would not be able to do the work that we continue to do.

To remain a relevant and productive organization, CHAEN will continue to work with its members and other stakeholders including HAE Canada, AOHQ, HAE International and the sponsors among others. CHAEN continues to work closely with HAE Canada with the goal of reducing duplication of efforts and maximizing impact. We continue to have an open dialogue that has been important to ensure both organizations are maximizing impact. CHAEN continues to work closely with HAE Canada and AOHQ in several advocacy roles to ensure Canadian patients have access to first line guideline recommended medications.

Guidelines continue to be key tool for practitioners and CHAEN develops and maintains HAE guidelines in accordance with the Appraisal of Guidelines for Research & Evaluation (AGREE) Instrument, which was developed to address the issue of variability in the quality of practice guidelines. CHAEN convened Guideline development meetings in 2013 and 2018 leading to the publishing of Guidelines in 2014 and 2019. The meeting authors include a wide array of leading HAE experts from around the world and across Canada. The next Guideline Development meeting is planned for September 20-22, 2024, in Toronto. This will be an in person meeting to ensure open rigorous dialogue and build a sense of community for CHAEN members. All CHAEN members have been sent a registration form and COI declaration and I urge everyone to complete and return them to the CHAEN office by June 30.

One key area of interest for CHAEN over the years has been the development of an HAE registry. As I mentioned last year, Lumiio has been selected as the vendor to work closely with the Canadian Hereditary Angioedema Registry Steering Committee to develop the registry. I would like to thank Lumiio for their ongoing assistance and I am pleased to say, that with multi-stakeholder engagement, we now have completed the foundation of the registry and REB applications have been submitted, or are in the process of being submitted, at 6 key pilot sites in Vancouver, Calgary, Toronto, Hamilton, Montreal and Halifax.

This required a significant amount of work by the Registry Steering Committee which I have had the privilege to chair. Members include, Dawn Goodyear as Vice Chair, Hugo Chapdelaine, Amin Kanani, Paul Keith, Gina Lacuesta and Susan Waserman. Once these sites are active, we intend to rigorously engage other sites both academic and community moving forward. Our eventual goal will be to have all CHAEN members participating, and all of their patients enrolled. We continue to collaborate with other organizations internationally who are developing their own registries such as ACARE and the Italian HAE physician organization. Such collaboration is important to ensure data alignment and harmonization as much as possible.

You will have noticed in recent CHAEN communications that we have rebranded with a new logo that more accurately reflects the French translation of the acronym HAE. We are also excited to be shortly launching a redesigned website at a new URL at chaen-rcaoh.ca.

The public side of this website is available now, and the members only login will be launched shortly and the French side will follow.

Despite all the hard work by CHAEN’s volunteers, we still need more members to step forward to help with the initiatives outlined above. Now that we have so many members, I hope that will be possible. I appreciate all of us are busy with many obligations, however I do ask that if anyone has time to commit to CHAEN by serving on any one of its committees please let me or the CHAEN office know. Your participation would be most enthusiastically welcomed. The success of the organization depends heavily on the support of its volunteers.

It has been my honour to serve as Chair of CHAEN, and I look forward to serving its members as we move into our next exciting year.

Respectfully submitted,

Stephen Betschel
Chair