An Inventory of Rare Disease Registries in the Canadian Landscape

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Canada currently lacks a consolidated and centralized inventory of rare disease registries (RDRs). To address this gap, we created an inventory of RDRs, including 66 RDRs in Canada and 82 international RDRs that include patients living in Canada. This inventory captures RDRs that have the potential for generating real-world evidence to answer specific questions (e.g., natural history, postmarket therapy assessment). This inventory includes high-level information about RDRs that are important to decision-makers, such as coverage in Canada, sources of data, and types of data.

Alternate Level of Care in Canada

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Alternate level of care (ALC) is a designation used in Canada that is applied by clinical staff to that portion of a patient’s hospital stay when the patient is occupying a bed in a facility (e.g., acute care hospital) and does not require the intensity of resources or services typically provided in that care setting. (In other parts of the world ALC is often referred to as delayed discharge.)

Utilization of Cancer Therapies for Advanced Non–Small Cell Lung Cancer With an Oncogenic Driver Mutation

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Recent advancements in non–small cell lung cancer (NSCLC) treatment have introduced targeted therapies for tumours with specific oncogenic mutations, offering alternatives to standard chemotherapy. However, it is uncertain if patients with advanced NSCLC who have already undergone targeted therapies and chemotherapy can benefit from immune checkpoint inhibitors. This study examined current treatment patterns and explored the feasibility of comparing the effectiveness of immune checkpoint inhibitors to single-drug chemotherapy in such patients.

Icatibant Implementation Advice Panel

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Canada’s Drug Agency is convening an implementation advice panel to advise the drug programs on funding criteria for icatibant for hereditary angioedema (HAE) with normal C1-inhibitor function (HAE nC1-INH), also known as type III HAE.

Appropriate Use of Antipsychotics in Long-Term Care

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Antipsychotic medications are sometimes used to treat the behavioural and psychological symptoms of dementia (e.g., responsive behaviours such as aggression, anxiety, or agitation) for people living in long-term care. While the use of antipsychotics may be reasonable in some cases, there is concern that antipsychotics are prescribed for people with dementia when they are not indicated or when harms outweigh potential benefits.

Review of Guidelines on Clonidine for Various Indications

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Question(s)

  1. What are the evidence-based guidelines regarding the use of clonidine in adults with hypertension?
  2. What are the evidence-based guidelines regarding the use of clonidine in adults with substance use disorders (i.e., opioids, benzodiazepines, alcohol)?
  3. What are the evidence-based guidelines regarding the use of clonidine for the control of hot flashes in adults with menopause?
  4. What are the evidence-based guidelines regarding the use of clonidine in adults with restless leg syndrome?
  5. What are the evidence-based guidelines regarding the use of clonidine for prevention of migraines in adults?
  6. What are the evidence-based guidelines regarding the use of clonidine in adults with ADHD?
  7. What are the evidence-based guidelines regarding the use of clonidine in adults with Tourette syndrome?

Key Message

​What Is the Issue?

  • Clonidine is an antihypertensive medication that has been used for a range of health conditions including hypertension, substance use disorders, menopause, restless leg syndrome, migraines, attention-deficit/hyperactivity disorder (ADHD), and Tourette syndrome. The role of clonidine in the treatment of these health conditions is unclear.

What Did We Do?

  • To inform decisions around the use of clonidine in various health conditions, we sought to identify and summarize recommendations from evidence-based guidelines.
  • We searched key resources, including journal citation databases, and conducted a focused internet search for relevant evidence published since 2014. One reviewer screened articles for inclusion based on predefined criteria, critically appraised the included guidelines, and narratively summarized the findings.

What Did We Find?

  • We identified 12 evidence-based guidelines that included recommendations on the use of clonidine. We identified 1 guideline on hypertension, 4 guidelines on substance use disorders, 4 guidelines on menopause, 2 guidelines on restless leg syndrome, and 1 guideline on Tourette syndrome. We did not identify any evidence-based guidelines that included recommendations on the use of clonidine for the treatment of ADHD or migraine prophylaxis.
  • The included guidelines recommend clonidine for hypertension in pregnant women, management of opioid withdrawal and alcohol withdrawal, and Tourette syndrome.
  • The recommendations in the guidelines for menopause were mixed. Two guidelines do not recommend clonidine and 2 guidelines recommend clonidine for the treatment of vasomotor symptoms (i.e., hot flashes) of menopause.
  • One guideline does not recommend the use of clonidine for restless leg syndrome in people who are pregnant or lactating and 1 guideline states that there is insufficient evidence to support or refute the use of clonidine in restless leg syndrome.

What Does It Mean?

  • The use of clonidine is recommended for some health conditions and is not recommended for others. Due to the inconsistency in recommendations on the use of clonidine for the control of hot flashes in menopause, decision-makers may wish to consider other factors such as patient preferences and availability of other treatment options.
  • Future evidence-based guidelines that include recommendations on the use of clonidine for the prevention of migraines, treatment of ADHD and the treatment of hypertension in a broader population would help fill the gaps identified in this report.

Re-Treatment With Immune Checkpoint Inhibitors

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Key Message

We did not find any evidence regarding the clinical effectiveness and safety of second re-treatment with pembrolizumab for nonsmall cell lung cancer, classical Hodgkin lymphoma, and advanced melanoma. 

We did not find any evidence regarding the clinical effectiveness and safety of second re-treatment with cemiplimab for cutaneous squamous cell carcinoma. 

We did not find any evidence-based guidelines regarding the second re-treatment with immune checkpoint inhibitors for nonsmall cell lung cancer, classical Hodgkin lymphoma, advanced melanoma, and cutaneous squamous cell carcinoma.