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Hemoglobinopathies

How to use this Research Library Guide

This LibGuide is aimed primarily at adult Hematology subspecialty residents and fellows undertaking training in Hemoglobinopathies at the University of Toronto. It may also be of interest to other trainees rotating through Hematology and those seeking a better understanding of these disorders. The LibGuide is a one-stop source for learning about Sickle Cell Disease and Thalassemia Syndromes, providing scholarly articles and other educational resources.

The library content has been divided into core and supplementary content. At the bottom of each "reading list" page is a search box for finding the full text at UofT Libraries. Alternatively you can download the lists and search your own institution's library. 

The LibGuide is also a portal to assist you in developing research questions in Hemoglobinopathies and providing the tools to develop an academic interest in the field. Please feel free to contact the LibGuide authors for advice and assistance.

Why Sickle Cell Disease and Thalassemia (Hemoglobinopathies)?

  • The Hemoglobin Disorders represent a global and local burden of disease, and are the most common single gene disorders worldwide.
  • Approximately 20% of the 12 million inhabitants of Ontario belong to visible ethnic minorities. 
  • Approximately 3% of the North American population is a carrier for a significant hemoglobin variant.
  • The survival of ß-Thalassemia has improved over the past 4 decades due to the institution of several landmark therapies: regular blood transfusion, iron chelation therapy and cardiac MRI iron assessment. 
  • Life expectancy for Thalassemia Major in birth cohorts from >1975 is greater than 90% at 30 years. This compares to an invariably fatal outcome in early adulthood just 2-3 decades ago. 
  • A similar trend in survival has been seen in Sickle Cell Disease, whereas in 1973 the life expectancy was teenage years, but has slowly improved to the 6th decade of life.
  • This improvement in lifespan has impacted on the number of patients requiring expert ongoing medical care, and the burden it places on healthcare resource: technology, therapeutics, and personnel.

Training in Adult Hemoglobinopathies at UofT

To date, clinical training and research in Hemoglobinopathies has focused on the pediatric population. However, with improved life expectancy and survival into adulthood, there are new challenges in managing the complications unique to adults.

Adult hematology subspecialty residents rotate through a 4 week block of clinical and laboratory experience at UHN's Red Blood Cell Disorders clinic as well as gain some pediatric exposure in hemoglobinopathies. Trainees from other programs are welcome to spend a an elective with us. 

The University's Adult Hemoglobinopathy Fellowship offers a funded comprehensive, multidisciplinary advanced two-year training program in the field.

Hemoglobinopathies in Toronto

The Red Blood Cell Disorders Program, at UHN's Toronto General Hospital and the Hemoglobinopathy Program at SickKids are home to one of the largest Sickle Cell and Thalassemia programs in North America. We believe in holistic patient care, managing the acute problems patients with these diseases and other rare anemias face, and also the long term complications. The clinic also has expertise in the management of iron overload. The aim is to improve the physical, psychological and social health of the patients,enhancing the quality of life and also the life expectancy. A transition navigator facilitates the transition of care for AYA from the pediatric to adult program. We also have close links to McMaster Medical Centre's hemglobinopathy clinic.

 

 

 

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