Dr. Irene Lara-Corrales is a Professor of Pediatrics at the University of Toronto and a staff physician in Pediatric Dermatology at the Hospital for Sick Children in Toronto, Canada.  She completed her medical training and pediatric residency at the University of Costa Rica, in San Jose, Costa Rica and her pediatric dermatology training at the Hospital for Sick Children. She obtained a Master in Science degree from the University of Toronto. She is involved in numerous clinical and research endeavours, as well as in teaching commitments. She co-directs the Genodermatoses, Epidermolysis Bullosa, Vascular Tumors, Hidradenitis suppurativa and Café-au-Lait Screening clinics at SickKids and is part of the multidisciplinary clinic for the management of complex vascular anomalies. She is actively involved in the Pedriatric Dermatology Research Alliance (PeDRA) and Co-Chairs the Acne and Hidradenitis suppurativa study group. Her research interests include genodermatoses, inflammatory diseases and vascular anomalies. She is the current research lead for the Division of Dermatology at SickKids”.

Title: A Canadian Interdisciplinary collaboration for Hidradenitis Suppurativa patients.

Lay Abstract: Hidradenitis Suppurativa (HS) is a chronic disease in which patients have recurrent inflamed painful nodules, draining sinus tracts and scarring. It can be debilitating for patients and is associated with negative impacts on quality of life. HS is a main research priority for the Skin Investigation Network of Canada. Many areas for further research have been identified, including information about the disease in children and patients of different ethnicities, data on what treatments may work best in different patients, and information gathered in real world settings. We are proposing to create a registry of Canadian patients, including children and adults of all different backgrounds. Our team will include physicians of multiple specialties (dermatology, rheumatology, general surgery; endocrinology) and patients to make sure that we are considering all aspects of the disease and its associations. We will enrol patients in multiple different centres. We will collect information on their HS and other health conditions, as well as treatments and changes over time. We will also include advanced tests of genetics and cytokines to advance understanding of the disease. This data will help us in figuring out how to best treat and manage patients with HS in Canada.

Scientific Summary: Hidradenitis Suppurativa (HS} is a chronic inflammatory disease characterized by recurrent painful nodules, draining sinus tracts, and scarring of intertriginous skin. it can be debilitating for patients and is associated with a considerable burden of disease. The prevalence may be as high as 3.84% in the diverse Canadian population. HS was identified as 1 of the top 10 research priorities by the Skin Investigation Network of Canada. There are numerous questions that this initiative highlighted that need further data to be answered, from pathogenesis to treatment responses. The lack of satisfactory and predictable response to any treatment category underlies ongoing attempts of innumerable medical and surgical therapies, all with reports of efficacy in only some patients. Understanding the different clinical phenotypes .and their associations may help better predict comorbidities and effective treatments across different patient groups and including paediatric populations. There is a need to evaluate these questions in a real­ world setting including the range of diverse patient backgrounds and different clinical phenotypes of HS seen in the Canadian population. Multiple conditions appear to be associated with HS. Optimized care-is provided by multiple specialists, including dermatologists, surgeons, gynaecologists, pain specialists, endocrinologists, dieticians and wound care specialists in addition to family doctors and paediatricians. Several screening recommendations have been published, which may entail considerable time and resources to implement, including up to 20 different comorbidities to be considered. We propose the inception of a Canadian registry of paediatric and adult patients with HS with rich standardized clinical, radiographic, serologic and genetic data. Clinical care templates will ensure screening of important comorbidities and evaluation of the complete range of treatment options for patients. This registry will provide longitudinal data for important knowledge advancement that will address the research questions that have been prioritized by the Skin Investigation Network of Canada.

Goals (Long term): To advance our understanding of the pathogenesis, comorbidities, and lifetime natural history of HS based on a diverse and inclusive Canadian population, and provide all patients with HS a coordinated, individualized and wholistic care to improve clinical outcomes.

Objectives: To create the infrastructure to support a multi-centre registry of patients and ensure coordinated, optimized care of patients with HS in Canada.
Central Hypothesis: A Canadian registry that includes the range of ethnic backgrounds and ages representative of our diverse population will capture important information to advance disease knowledge and outcomes in this population.

Specific Aims:
1.Create a REDCap database to support a registry of patients with HS that will be accessible to practitioners from all three collaborating centres.
2.Create a clinical template that encompasses all the clinical assessments and screening recommendations for initial and follow-up visits for patients with HS, that can be applied at all participating centres

Potential Impact: The registry and clinical template will provide important information to help answer the questions highlighted by the Skin Investigation priority questions. While we will start as a multi­ site initiative within Toronto to build the framework of this collaborative model, we plan to scale to develop a provincial and, eventually, national network including other academic sites across Canada. This will enable us to further capture and enrich data outcomes, as well as include adequately powered cytokine and biomarker analysis to deepen knowledge of HS and address the remaining questions that have been identified by Skin Canada.

Dr. Elena Netchiporouk is an Assistant Professor in the Divisions of Dermatology and Experimental Medicine at McGill University and a Fonds de Recherche du Québec-Santé (FRQS) Junior 1 Clinician Scientist. She earned her medical degree from the Université de Montréal, completed her dermatology residency at McGill University, and holds an MSc in Experimental Medicine.

Dr. Netchiporouk specializes in complex medical dermatology, orphan diseases, and immune-mediated skin diseases—areas with significant unmet clinical needs and strong patient advocacy. She co-directs several specialty clinics, including the multi-disciplinary urticaria/mastocytosis clinic, the multidisciplinary oncogenodermatology clinic, and the skin fibrosis clinic, where she teaches and mentors dermatology residents and medical students. Since her appointment as a clinician investigator at the Research Institute of the MUHC in 2020, Dr. Netchiporouk dedicates 50% of her time to research. Her current work focuses on the risk factors and pathogenesis of immune-mediated skin diseases and genodermatoses.

Dr. Netchiporouk has published over 145 peer-reviewed articles indexed in PubMed, with an H-index of 29. Her research has been featured in leading dermatology and medical journals, including the Journal of the American Academy of Dermatology, JAMA Dermatology, The Lancet, and The Lancet Americas. Her work is funded by major agencies such as the Canadian Institutes of Health Research (CIHR), Fonds de Recherche du Québec-Santé (FRQS), and Canadian Dermatology Foundation (CDF).

Title: Canadian Morphea Registry (C-MORE): Characterizing the landscape of morphea in Canada and elucidating predictors of severe disease.

Layman Abstract: The Canadian Morphea Registry (C-MORE) is a national research project hosted by the McGill University Health Centre (MUHC) Research Institute. It focuses on localized scleroderma (LS), a rare autoimmune disease that causes skin thickening and can lead to long-term physical and functional complications. C-MORE collects clinical and molecular data from patients across Canada to better understand LS, its prevalence, risk factors, treatment effectiveness, and impact on quality of life. The registry aims to improve diagnosis, guide treatment strategies, and support clinical trials for new therapies. Since 2021, C-MORE has enrolled over 190 patients, created a biobank for research, and developed a network of clinicians and researchers. The goal is to improve care, advance research, and support those living with LS.

Scientific Summary: The Canadian Morphea Registry (C-MORE) is a national research initiative hosted by the McGill University Health Centre Research Institute. It investigates localized scleroderma (LS), an autoimmune disease causing skin fibrosis that can lead to significant functional and aesthetic complications. LS affects approximately 75,000 Canadians and is often diagnosed late, resulting in permanent damage and reduced quality of life. C-MORE addresses critical knowledge gaps in LS by collecting standardized clinical and molecular data. Its goals include studying the disease’s epidemiology, burden, natural history, and treatment outcomes while facilitating clinical trials and improving patient care. Since its launch in 2021, C-MORE has enrolled over 190 patients across eight Canadian sites, established a biobank for translational research, and developed a comprehensive data infrastructure to support national and international collaboration. By bringing together researchers, clinicians, and patients, C-MORE aims to advance understanding of LS, improve treatment strategies, and enhance care for this under-researched autoimmune disease. With SkIN Canada funding for year two, C-MORE will develop a logo, create a website, and establish multi-site REDCap support.

Dr. Davide Brambilla is associate professor of drug delivery at the Faculty of Pharmacy at the Université de Montreal, Quebec, Canada. Prof. Brambilla completed his PhD in pharmaceutical technologies at the School of Pharmacy of the University of Paris-Sud (now Paris-Saclay) with P Couvreur on the design of nanoparticles for drug delivery applications. In 2012, he joined the Swiss Federal Institute of Technology in Zurich (ETH) where, after 3 years of post-doctoral stay, he was promoted group leader. In 2017, he was appointed Assistant Professor at the Université de Montréal, where he started his research laboratory focused on micro and nanotechnology-based drug delivery tools and diagnostic devices and where he teaches the development of biological drugs and the pharmacokinetics. In 2022 he was appointed associate professor. His laboratory is composed of 12 members and mainly focuses on the design of organic nanoparticles for the delivery of genetic materials for gene therapy applications, and the design of polymeric microneedles for diagnostic applications. He pioneered the concept of fluorescent dermal micro-tattoos for the non-invasive and wearable monitoring of physiological and pathological parameters, which currently investigated clinical settings.

He is a junior research fellow of Québec Research Fund, the biotherapy research Chair from the Canadian Generic Pharmaceutical Association and Biosimilars Canada and acts as Editor of the Journal of Controlled Release.‎ In 2023 he was Visiting Professor at the University of Geneva and the Politecnico di Milano. In 2023 he was awarded the new investigator research award of the Association of Faculties of Pharmacy of Canada. He co-authored over 60 publications in peer-reviewed international journals (Sci Adv, Adv Mat, Adv Funct Mat, Small, Biomaterials, J Control Release, JCI Insight), filed 2 patents and co-founded the start-up company mTatt.Inc.

Dr. Paul Hébert, a proud Acadian, is a clinician scientist and health leader, as well as a practicing palliative care and former critical care physician. He is a full professor at the University of Ottawa and previously at the Université de Montréal.

As a researcher, he is best known for major resuscitation and transfusion trials. In particular, he led a ground-breaking trial entitled, “Transfusion Requirements in Critical Care (TRICC),” published in the New England Journal of Medicine (1999). This study demonstrated that a restrictive approach to the care of critically ill patients (i.e., giving less blood) was certainly no worse than, and was possibly superior to, giving more red cells. This study decreased blood use in acute care settings worldwide. Many other basic and clinical blood studies followed, including a recent study again published in the NEJM demonstrating that patients suffering from an myocardial infarction are one of the only patients who need more blood rather than less.

Dr. Hébert has conducted research in both critically ill adults and children, palliative care, aging in place and long term care. To do so, he secured over $65 million in research project funding. These investments have resulted in excess of 480 articles in peer reviewed journals (16 articles in NEJM, 13 in the Journal of the American Medical Association, 3 in the Lancet, 7 in the Annals of Internal Medicine, and 9 in the British Medical Journal). These projects and publications would not have been possible without the support of the Canadian Critical Trials Group, the help and support of literally thousands of patients and families, nurses, physicians and researchers from around the globe. He is most proud of the young faculty from several universities that he has had the pleasure of mentoring, from whom he has learned a great deal.

During his career, he has had the opportunity to be the Canadian Medical Association’s Editor-in-Chief, publishing over 80 editorials in Canada’s leading medical journal, chaired the Canadian Critical Care Trials Group, the world top critical care research network, mounting major programs and leading more than 400 physicians as a Physician-in-Chief and Director of clinical research at the Centre de Recherche du Centre hospitalier de l’Université de Montréal ; the Chief Medical and Science Officer at the Canadian Red Cross and a scientific Director of Ontario’s Public Health Emergency taskforce. These many leadership experiences have provided him with unique and diverse perspectives on the health care and health research ecosystems.

Dr. Hébert has had a long relationship with the former Medical Research Council and now with CIHR, and he attributes much of his success to funding from MRC/CIHR. Dr. Hébert has led a clinical trial transformation initiative for MRC, was a member of an inaugural Institute Advisory Board, been on many peer review panels and developed the vision for the Strategy for Patient-Oriented Research as its original Executive Director. Dr. Hébert is a Fellow of the Canadian Academies of Health Science, and was also the recipient of a number of career awards including the Landsteiner-Alter award for his groundbreaking work in transfusion medicine.