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Wednesday, December 13, 2017

About the Canadian Association of Paediatric Nephrologists (CAPN)

CAPN is the Canadian organization for medical professionals who treat children and adolescents with kidney disease (paediatric nephrologists). Through its members, CAPN advances the knowledge of paediatric nephrology with scientific meetings and participation in clinical research studies. We educate Canadian and international medical graduates in paediatric nephrology training programs accredited by the Royal College of Physicians of Canada. We advocate and promote the best clinical practices to treat children and adolescents with conditions of the kidneys and urinary tract, enabling patients and families to reach their full potential. We are the Canadian Association of Paediatric Nephrologists.

Canadian research in paediatric nephrology

Canadian pediatric nephrology researchers are world leaders in the investigation of the basic and clinical sciences involving childhood kidney diseases.

National pediatric nephology collaboration

CAPN is working throughout the year to develop initiatives that serve our community. We meet twice a year to discuss scientific, clinical, educational and advocacy issues that are important to the patients we help.

HEALTH RESOURCES

Supporting clinical excellence in the care of Canadian children with kidney disease.

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KIDNEY RESEARCH

Working to advance knowledge of kidney disease and health through clinical and basic science.

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TRAINING

Supporting Canadian Paediatric Nephrology Trainees through education, research and advocacy.

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Update on Procysbi and Cystagon availability in Canada

Recently Health Canada approved the long-acting form of cysteamine, PROCYSBI, which was shown to be non-inferior to CYSTAGON to treat cystinosis (Langman CJASN 2012). A prospective non-randomized study also suggests that a switch from CYSTAGON to PROCYSBI may result in improvements in quality of life indicators (Langman J Peds 2014). The current standard of therapy (CYSTAGON) is approximately 100-fold less expensive than the predicted yearly costs of $1 million for each patient treated with PROCYSBI.

Patients and physicians are happy about the recent approval to begin marketing PROCYSBI in Canada. We were however alarmed to learn that we will no longer be able to prescribe CYSTAGON as of January, 2018 because it is not officially approved for marketing in Canada. We believe that this will create undue financial hardships for our private insurance companies, provincial medicine formularies, and most importantly, for our patients, including those who are currently well-controlled on CYSTAGON.

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New paediatric hypertension guidelines released in 2017

The CAPN executive endorses the recent AAP Clinical Practice Guideline for Screening and Management of High Blood Pressure in Children1  and Adolescents and the Canadian Hypertension Education Program (CHEP) guidelines on Hypertension in Children2,3 and would like to acknowledges the contributions of Dr. Janis Dionne to the AAP guidelines and those of Drs Genevieve Benoit, Janusz Feber and Janis Dionne to the Canadian Hypertension Guidelines.

The guidelines are an updated review of the current literature in Pediatric hypertension. The recommendations are well summarized and important changes for applicability in clinical practice have been made.  

However, the executives as well as many specialists in hypertension are concerns about the lack of availability of Ambulatory Blood Pressure Monitoring (ABPM) devices validated for children in Canada outside of University affiliated Pediatric Health Care centers. 

CAPN would like to advocate for increase availability of ABPM devices validated for children throughout Canada, which would allow better diagnosis and cost effective investigation of children requiring investigation for hypertension.

  1. Flynn JT, Kaelber DC, Baker-Smith CM, Blowey D, Carroll AE, Daniels SR, de Ferranti SD, Dionne JM, Flinn SK, Falkner B, Gidding SS, Goodwin C , Leu MG, Powers ME, Rea C, Samuels J, Simasek M, Thaker VV, Urbina EM, for the Subcommittee on Screening and Management of High Blood Pressure in Children. Clinical Practice Guideline for Screening and Management of High Blood Pressure in Children and Adolescents. Pediatrics 2017;140(3) e2017190
  2. Dionne JM, Harris KC, Benoit G, Feber J, Poirier L, Cloutier L, Nakhla M, Rabi D, Daskalopoulou SS, Fournier A for the Hypertension Canada Guideline Committee. Hypertension Canada’s 2017 Guidelines for the Diagnosis, Assessment, Prevention, and Treatment of Pediatric Hypertension. Can J Cardiol 2017;33:577-585.
  3. Harris KC, Benoit G, Dionne J, Feber J, Cloutier L, Zarnke KB, Padwal RS, Rabi DM, Fournier A; CHEP Guidelines Task Force.Hypertension Canada's 2016 Canadian Hypertension Education Program Guidelines for Blood Pressure Measurement, Diagnosis, and Assessment of Risk of Pediatric Hypertension.Can J Cardiol. 2016 May;32(5):589-97

 

 

@CAPNeph on Twitter

Patient CKD resources

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The Kidney Twin Chronic Kidney Disease (CKD) tools were developed to help support children and adolescents living with CKD and kidney failure. The modules are available for the young child, older child and adolescent with chronic kidney disease, and contain a Facilitator Guide, Caregiver Guide, the module itself, and activity sheets to reinforce the concepts. The modules are free to use.

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About the Canadian Association of Paediatric Nephrologists

The Canadian Association of Paediatric Nephrologists is a non-profit professional organization of practicing paediatric kidney specialists in Canada. Our mandate is to promote our specialty, encourage trainees to pursue high standards of clinical, research and educational excellence, to discover and promote research in pediatric kidney health of the highest standard, and above all, to provide exemplary care for our patients living with kidney disease. To find out more, please contact us here.

Copyright 2012-2017 Canadian Association of Paediatric Nephrologists