{"id":2308,"date":"2023-07-31T18:31:38","date_gmt":"2023-07-31T18:31:38","guid":{"rendered":"https:\/\/lab.research.sickkids.ca\/hayeems\/?page_id=2308"},"modified":"2024-03-04T20:36:33","modified_gmt":"2024-03-04T20:36:33","slug":"our-research-program","status":"publish","type":"page","link":"https:\/\/lab.research.sickkids.ca\/hayeems\/our-research-program\/","title":{"rendered":"Our Research Program"},"content":{"rendered":"

Research Rationale<\/h2><\/div>
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As genome-wide sequencing and advanced genetic testing technologies continue to evolve and become a routine part of health care, continued funding and implementation of these tests in clinical settings requires a rich body of evidence. We aim to help establish this evidence.<\/span>\u00a0<\/span><\/p>\n

\u202f<\/span>We can think of the different types of evidence required to guide funding and implementation decisions as a <\/span>\u201cchain of evidence<\/span>\u201d<\/span><\/b>. This framework shows all domains of evidence are interconnected, and that evidence from one domain lays the groundwork for new domains to be explored. For example, the ability of a test to perform accurately in the laboratory must first be established before domains such as diagnostic thinking (how the test result influences a diagnosis) can be explored.\u202f<\/span>\u202f<\/span>\u00a0<\/span><\/p>\n

To learn more about each domain, see the interactive figure below:\u202f<\/span>\u00a0<\/span><\/p>\n

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Our <\/span>ability to define and measure these domains of evidence has been limited. While policymakers are interested in understanding the impact of genetic testing on clinical care and decision-making, as well as the personal value of genetic testing from the patient\u2019s perspective, we currently do not have standardized methods to measure these outcomes<\/span>.\u00a0\u00a0<\/span><\/span>\u00a0<\/span><\/p>\n<\/div><\/div><\/div>

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What We Do<\/h2><\/div>
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To address these gaps, we are developing measurement tools to capture the clinical utility and personal utility of genetic testing. In our work, clinical utility relates to the <\/span>diagnostic thinking<\/b><\/span> and <\/span>therapeutic efficacy<\/b><\/span> domains in the chain of evidence and personal utility relates to the <\/span>patient outcome efficacy<\/b><\/span> domain.<\/span>\u00a0<\/span><\/p>\n

To measure clinical utility, we have developed the <\/span>Clinician-reported Genetic testing Utility InDEx (C-GUIDE\u2122)<\/a>.\u00a0<\/span><\/p>\n

To measure personal utility, we are in the process of developing the <\/span>Patient-reported Genetic testing Utility InDEx (P-GUIDE\u2122)<\/a>.\u00a0\u00a0\u00a0<\/span><\/p>\n

While <\/span>C-GUIDE\u2122<\/b><\/span> and <\/span>P-GUIDE\u2122<\/b><\/span> can be used independently, we aim to develop paired measurement tools to assess the utility of genetic testing in a broad range of clinical settings.\u00a0\u00a0<\/span>\u00a0<\/span><\/p>\n

Furthermore, to characterize the value of genomic diagnostic and screening technologies from the system perspective \u2013 we conduct various projects to design new models of care and characterize their system impacts.<\/span>\u00a0<\/span><\/p>\n<\/div><\/div><\/div>

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<\/i>Provider Outcomes: C-GUIDE\u2122<\/span><\/a><\/div><\/div><\/div>
<\/i>Patient Outcomes: P-GUIDE\u2122<\/span><\/a><\/div><\/div><\/div>
<\/i>System Outcomes<\/span><\/a><\/div><\/div><\/div><\/div>
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