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May 21, 2019

About the Canadian Association of Paediatric Nephrologists (CAPN)

CAPN is the organization for Canadian medical professionals trained in child and adolescent kidney disease diagnosis and management. We advance knowledge through participation in research studies. We educate through training programs accredited by the Royal College of Physicians of Canada. We advocate for the best clinical practices to treat patients with conditions of the kidneys and urinary tract, enabling them to reach their full potential. We are the Canadian Association of Paediatric Nephrologists. (Photo credit Kyle Pearce "Inukshuk Sunset", https://flic.kr/p/4D4wZv) Creative Commons License.

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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News and updates

Calgary to host IPNA 2022!

Congratulations to the organizing committee for IPNA 2022, which was recently awarded the bid to host the international congresss in pediatric nephrology!  Check back here or the IPNA website for details as the date approaches, or come visit our booth at IPNA 2019 in Venice!

Update for Canadian Cystinosis Patients

CAPN has recently been informed that Cystagon will undergo a Health Canada review for approval in Canada, making the drug avialble to Canadian cystinosis patients through regular prescription.  The manufacturer has stated that the market price of Cystagon will be no higher than 1/3 of the cost of Procysbi. We will post updates on the progress of the application as it comes available.

Ongoing advocacy efforts regarding Procysbi and special access restrictions for Cystagon

Many patients and pediatric nephrologists were concerned to hear access to Cystagon through the Health Canada Special Access Program was restricted earlier this year with the approval of Procysbi for marketing in Canada for treatment of infantile nephropathic cystinosis.  Procysbi underwent a common drug review through the Canadian Agency for Drugs and Technologies in Health (CADTH), which recommended funding Procysbi through the Provincial Drug Monitoring Boards, if there was a "significant cost reduction" in the proposed market price.  To date, no province has confirmed that they will fund the higher cost of Procysbi.  Several efforts have been ongoing to address this specific issue of access to medication:

1. CAPN has posted a letter to Health Canada detailing our concerns regarding the ability to lock out a less expensive therapy that is meeting the needs of many patients with nephropathic cystinosis. Since that time, the Health Canada Special Access Program (SAP) program has been very helpful in assisting clinicians throughout the country transition our patients with nephropathic cystinosis to Procysbi. Physicians should be aware that Cystagon is still available through SAP for patients who meet the following criteria:

  • G-tube fed with small tubes
  • Receiving sodium bicarbonate

Patients who do not meet these criteria cannot access Cystagon through SAP because Health Canada has strict regulations which they must abide for fair market competition.

2. Cystagon has never gone through the approval process in Canada. It is important for physicians to know that if we are prescribing a non-Health Canada approved medication i.e: Cystagon, we are liable if there was ever a medical error in the fabrication of the medication.

We encourage clinicians to contact the Health Canada SAP program if they want their patients to be eligible for Cystagon. To our knowledge, no patient has been left without treatment.

CAPN recently was contacted by the new distributor of Cystagon regarding marketing of Cystagon in Canada. Cystagon has been sold to a company who is already working in rare diseases in Canada and there is a will to have Cystagon approved by Health Canada. Approval of Cystagon for marketing in Canada will allow families and physicians to decide which medication is best to control their disease. However, it does not guaranty that the cost of Cystagon will remain lower than Procysbi. We will keep you updated on the situation but it may take time.

In addition, Pediatric Nephrologist Dr. Julian Midgley from Alberta Children's Hospital was featured on a March 10, 2018 online CBC article advocating on this issue and its impact on patient well-being.

CAPN has also joined a consortium of organizations concerned about formulary fairness for children in Canada, led by the Goodman Centre for Pediatric Formulations and the Canadian Paediatric Society. Together, we aim to bring issues affecting equity and access to pediatric medications in Canada to the forefront.

CAPN strongly supports that all patients with infantile cystinosis receive coverage for cystine-depleting agents by all provinces and territories. This is life sustaining therapy. All efforts should be made that the medication is competitively priced and that choices exist that allow concomitant bicarbonate therapy in pre-transplant patients.

The Canadian Childhood Nephrotic Syndrome Project

 CHILDNEPH recruitment centres across Canada

CHILDNEPH recruitment centres across Canada

We are undertaking a unique, national longitudinal cohort study of patients with steroid sensitive nephrotic syndrome and of the treatment practices of physicians caring for these patients. Our study will help us understand the association of nephrotic syndrome treatment variation with relapse rates experienced by patients. All children who present to pediatric nephrology clinics with a clinical diagnosis of nephrotic syndrome are eligible for enrollment. Twelve pediatric nephrology centres in Canada are participating. Talk to your nephrologist if you are interested in joining the study. You can talk to the study team by This email address is being protected from spambots. You need JavaScript enabled to view it. or here to find out more. Also, check out our new website here!

CAPN advocacy

The Canadian Association of Paediatric Nephrologists feels that advocacy is an important part of the professional responsibility of our members. Over the years, we have linked with several key stakeholder organizations to develop advocacy tool kits and skills to help improve the lives our our patients. Our current initiatives involve medication access and formulary fairness for pediatric nephrology patients. We are aware that other issues that come up that require our voice to be heard.  If there are issues from a patient or health care provider perspective, please contact us using the following advocacy request form.

Advocacy reources

Advocacy workshop (Baltimore May 2016)
 
Publications from CAPN on advocacy issues
 
 

 

AAP Hypertension Guidelines 2017 Update

hypertensionAfter more than 10 years since the 4th Report, an updated comprehensive blood pressure guideline for pediatric specialists has recently been published by the American Academy of Pediatrics. The Clinical Practice Guideline for Screening and Management of High Blood Pressure in Children and Adolescents, the unofficial 5th Report, provides 30 graded Key Action Statements that include the level of evidence and strength of the recommendation. With a focus on improving the recognition and diagnosis of hypertension in children, there are several features of the AAP clinical practice guideline that deserve highlighting. The AAP subcommittee developed a simplified table for screening blood pressure values based on the 90th percentile blood pressure at the 5th height percentile for each gender and age. The simple table may be used by the health care provider doing the initial blood pressure measurement to determine if the treating physician needs to review and/or repeat the measurement. In addition, the classification of hypertension in adolescents (≥ 13 years of age) has been simplified to threshold values that are consistent with the upcoming ACC/ AHA adult blood pressure guidelines. In children (<13 years), where blood pressure percentiles continue to define hypertension, the normative data has been improved with removal of data from children who were overweight or obese to be more representative of a healthy population. Investigation of confirmed hypertension has been clarified and simplified given the high rates of primary hypertension in the US population. This comprehensive guideline was developed by the AAP in partnership with several associations including the Canadian Association of Paediatric Nephrologists.   The guidelines are available through Open Access following the link below:

  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

Canadian Paediatric Hypertension Guidelines

hypertension 1Hypertension Canada has a long history of developing and disseminating evidence-based guidelines for primary care practitioners on blood pressure management and is likely part of the reason Canadian adults have one of the best rates of treated hypertension worldwide. Responding to requests for guidance on management of childhood blood pressure, Hypertension Canada formed a pediatric subgroup of content experts to systematically review the literature and develop guidelines for children and adolescents. The recently published guidelines provide graded recommendations for measurement and diagnosis of hypertension, as well as appropriate investigation and treatment of confirmed hypertension. There is a strong emphasis on health behavior management including achieving a healthy body weight along with dietary management and increased physical activity. Indications for pharmacologic therapy are provided as well as initial therapy options for children 12 years of age or older with primary hypertension. Embedded within all guidance descriptions are indications for referral to pediatric hypertension experts so that children with secondary forms of hypertension are identified and managed appropriately by specialists and/or any child where primary care practitioners are not comfortable with pediatric management. The guideline should empower primary care physicians to appropriately identify blood pressure abnormalities in children and investigate and manage or refer those with concerns of hypertension. Several members of CAPN were members of the Hypertension Canada pediatric subcommittee who developed these guidelines and all recommendations were vetted through the strict Hypertension Canada guideline process. The guidelines are available free as Open Access by following the link below:

  1. 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.

@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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Upcoming conferences

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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 2012-2018 Canadian Association of Paediatric Nephrologists