Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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NOT_YET_RECRUITING
2400 participants
OBSERVATIONAL
2025-03-01
2028-12-31
Brief Summary
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To evaluate the impact of genetic testing, patients and caregivers will complete quality-of-life questionnaires before and after testing. Participants may also choose to take part in a one-on-one interview at the end of the study to provide additional insights. They will have the option to link their data to the Institute for Clinical Evaluative Sciences (ICES), allowing researchers to explore health outcomes such as the costs of genetic testing and healthcare resource use.
Family members of participants will be invited to provide DNA samples to help identify genetic changes in the affected individual. Referring physicians will complete a survey to assess the clinical value of genetic testing for each patient they refer. We will perform an economic analysis comparing the genome wide sequencing to the standard genetic testing group.
The study's findings will offer important guidance on how genetic testing influences patient care, clinical outcomes, and the timing of genomic assessments in managing CKD.
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Detailed Description
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To evaluate the impact of genetic testing, patients and caregivers will complete quality-of-life questionnaires before and after testing. Participants may also choose to take part in a one-on-one interview at the end of the study to provide additional insights. They will have the option to link their data to the Institute for Clinical Evaluative Sciences (ICES), allowing researchers to explore health outcomes such as the costs of genetic testing and healthcare resource use.
Family members of participants will be invited to provide DNA samples to help identify genetic changes in the affected individual. Referring physicians will complete a survey to assess the clinical value of genetic testing for each patient they refer. We will perform an economic analysis comparing the genome wide sequencing to the standard genetic testing group.
The study's findings will offer important guidance on how genetic testing influences patient care, clinical outcomes, and the timing of genomic assessments in managing CKD.
Conditions
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Study Design
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COHORT
PROSPECTIVE
Study Groups
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< 1 year since diagnosis of kidney disease
Genetic Testing
Early access to genetic testing.
> 1 year since diagnosis of kidney disease
Genetic Testing
Early access to genetic testing.
Interventions
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Genetic Testing
Early access to genetic testing.
Eligibility Criteria
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Inclusion Criteria
2. Screen positive for potential genetic kidney disease using the Ontario Health Provincial Genetics Program Eligibility Criteria for genetic assessment in CKD AND
3. Index participant or substitute decision maker (SDM) can provide informed consent to participate.
1. Family/caregiver or SDM can provide informed consent to participate AND
2. Related patient participant must be enrolled in the study.
1. Patient participant who is enrolled in the main study.
2. 18 years or older.
3. The guardian for a minor
Exclusion Criteria
2. Fail screening as set out by the Provincial Genetics Program Eligibility Criteria for genetic assessment in CKD.
Family Members:
1. Family/caregiver or SDM is unable to provide consent, for any reason, to be an unsuitable candidate for the study.
2. Related patient participant is not enrolled in the study.
Healthcare Provider:
1\. Is not a referring healthcare provider.
Qualitative Sub-Study:
1. \<18 years of age unless the guardian can conduct the interview
2. Patient participant who is not enrolled in the main study.
ALL
Yes
Sponsors
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London Health Sciences Centre
OTHER
London Health Sciences Centre Research Institute OR Lawson Research Institute of St. Joseph's
OTHER
Dervla Connaughton
OTHER
Responsible Party
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Dervla Connaughton
Principal Investigator
Locations
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London Health Sciences Centre
London, Ontario, Canada
Countries
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Central Contacts
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Facility Contacts
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Dervla Connaughton, MD
Role: backup
Other Identifiers
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Genomic First Testing in CKD
Identifier Type: -
Identifier Source: org_study_id
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