Sickle Cell Emergency Patient Wallet Cards

The Canadian Hemoglobinopathy Association has been working for the past year on developing Sickle Cell emergency “wallet cards” for patients. The cards are available in English and French. If your clinic need to order cards please send the following information to info@canhaem.org:

Name of the clinic
Number of cards in each language
Address to be sent to

The cards will also be available for distribution during the upcoming Sickle Cell conference in Ottawa this September.

canhaem ed card

The Consensus Statement on the Care of Patients with Sickle Cell Disease in Canada

CanHaem is pleased to present the first ever national Canadian guidance for Sickle Cell Disease: The Consensus Statement on the Care of Patients with Sickle Cell Disease in Canada, 2015. We are indebted to Drs. Ewurabena Simpson and Madeleine Verhovsek who have worked tirelessly as editors of this important document.

Consensus Statement TOC

Table of Contents for the Consensus Statement on the Care of Patients with Sickle Cell Disease in Canada

Read More

VIDEO ARCHIVE OF SESSIONS from “Lifelines: The 2015 Pan-Canadian Thalassemia Conference”

The presentations from Lifelines Conference are offered below as another opportunity to attendees. We are grateful to the speakers for making them available.

DAY 1: Healthcare Providers

Canadian Thalassemia Guidelines, Dr. Hatoon Ezzat, University of British Columbia

 

Molecular Diagnostics, Dr. John Waye, McMaster University

 

AYA and Transition, Dr. Sarah McKillop, University of Alberta

 

Chelator Update, Dr. Madeleine Verhovsek, McMaster University

 

Bones and Nutrition, Dr. Angela Cheung (University of Toronto) and Dr. Ellen Fung (Oakland Children’s Hospital)

 

Thalassemia Intermedia, Dr. Paul Telfer, Queen Mary, University of London

 

Late Cardiac Effects, Dr. Jeremy Kobulnik, University of Toronto

 

DAY 2: Patients and Families

Gene Therapy and Bone Marrow Transplant, Dr. Alexis Thompson, Northwestern University

 

New Iron Chelators, Dr. Madeleine Verhovsek, McMaster University

 

Cure Panel Discussion, Drs. Thompson, Verhovsek and Wu

 

Hepatitis C Info Blast, Dr. Morris Sherman, University of Toronto

 

Endocrine Info Blast, Dr. Angela Cheung (University of Toronto) and Dr. Ellen Fung (Oakland Children’s Hospital)

 

Why Research Matters, Dr. Kevin Kuo, University of Toronto

 

Thalassemia Intermedia, Dr. Paul Telfer, Queen Mary, University of London

CanHaem welcomes approval of Deferiprone by Health Canada

The Canadian Hemoglobinopathy Association (CanHaem) welcomes the decision this week by Health Canada to approve the drug Deferiprone (Ferriprox) in Canada. This permits additional iron chelation options for patients and healthcare providers treating Thalassemia and other transfusion dependent anemias. It also aligns therapeutic options available in Canada with those preexisting in other jurisdictions Worldwide. CanHaem believes the increased choice and flexibility of three iron chelation drugs (Deferoxamine/Desferal; Deferasirox/Exjade; Deferiprone/Ferriprox) will improve patient outcomes and we encourage further iron chelation research and development in the future.
Information and details of provincial reimbursement criteria for Deferiprone are yet to be determined.

Phenotype Matching for Sickle Cell Patients: A Review and Recommendations for Transfusion Practice from the CBS

The Canadian Blood Service (CBS) is pleased to offer the following guidance for transfusion of patients with Sickle Cell Disease.

The Key points are:
• Alloimmunisation is common in sickle cell disease patients, and may complicate transfusion therapy.
• Patient phenotyping and prophylactic matching to reduce alloimmunisation is recommended.
• Transfusion requirements and the presence or absence of red cell antibodies influence recommendations on the extent of phenotyping and the utility of genotyping for sickle cell disease patients.

The full guidance can be found here

Communicating Prognosis in Sickle Cell Disease – Survey for adult providers

The following request may be of interest to adult sickle cell providers. Please address any queries directly to Dr. Pecker.

Dear Colleague,

We are conducting a survey of adult hematologists called “Communicating Prognosis in Sickle Cell Disease” to better understand adult hematologists’ practices of and opinions about discussing prognosis with their patients with sickle cell disease. A separate survey of pediatric hematologists  will allow us to compare responses from adult and pediatric hematologists. We hope our work will help improve these conversations.

The survey takes approximately 5-7 minutes to complete and was approved by the IRB at the Children’s Hospital at Montefiore.  All responses are completely anonymous.

To participate, please click on the following link:

https://www.surveymonkey.com/s/YSCV3CM

If you are able, we would appreciate your help in forwarding this survey to other providers who care for adults with sickle cell disease.
Thank you and we look forward to sharing the results of the survey with you soon.

Lydia H. Pecker, MD
Fellow, Hematology-Oncology
Children’s National Medical Center
Washington DC, 20010
lpecker@childrensnational.org

Advice for ED staff on Sickle Cell

Acute sickle cell pain episode (“crisis”) is the most common reason for patients with Sickle Cell Disease to present to a healthcare provider. However, the standard of care provided in the ED can vary significantly across institutions and provinces. CanHaem would like to offer some resources to assist you in providing the best possible care. Read More

Newborn screening in Canada for Sickle Cell Disease

Newborn screening for Sickle Cell Disease has been shown in many countries across the Globe to result in a dramatic improvement in the health and life expectancy of children with Sickle Cell. Screening will also detect newborns with Thalassemia Major. Read More

CanHaem welcomes healthcare professionals

CanHaem-logo-image only

CanHaem is a national not-for-profit organisation dedicated to improving the care of Canadian patients with Sickle Cell Disease and Thalassemia Syndromes. If you have an interest in these disorders or have experience with patients and want to learn or contribute more, we invite you to join the Canadian Hemoglobinopathy Association. Read More