Clinical trial · Interventional
The Genetics Update
The Genetics Update: Evaluating a Patient Platform to Deliver Updated Genomic Results
- Source
- ClinicalTrials.gov
- Retrieved
- Sep 8, 2026
- Layer
- normalized (units and labels harmonized; values unchanged)
- Run
- ING-CLINICALTRIALS-20260908-000001
Summary
Brief summary (as posted)
Genomic sequencing (GS) can reveal thousands of genetic variants in each patient. As our understanding of these variants evolves, some may be reclassified, which could have significant implications for a patient's health. However, notifying patients about these changes is challenging and can lead to delays in their care. Patients often feel anxious while waiting for updates, especially when they know their results might change but aren't sure when or how it will affect them. To address this, a new study aims to develop and test a digital platform called "The Genetics Update." This platform will help keep patients informed about their genomic results in a timely manner, potentially reducing the stress and uncertainty that many experience. The study will compare this new approach to the traditional methods of providing updates, such as genetic counseling sessions and letters, to see which is more effective at reducing patient distress. As the use of genomic sequencing continues to grow, finding better ways to communicate updates will become increasingly important.
Conditions
Conditions (3)
Free-text conditions as registered, with the CancerIndex entity they were reconciled to and the match type.
| Condition (as posted) | Mapped entity | Match | Confidence |
|---|---|---|---|
| Cancer | Malignant Neoplasm | ALIAS | 0.90 |
| Genetic Diseases | — | UNRESOLVED | — |
| Genetic Disorders | — | UNRESOLVED | — |
Interventions
Interventions (2)
| Intervention | Type | Mapped drug | Match |
|---|---|---|---|
| Genetics Update Platform plus standard genetic counselling | Behavioral | — | UNRESOLVED |
| Standard Genetic Counselling | Behavioral | — | UNRESOLVED |
Design
Arms and outcomes
Arms (2)
- type
- EXPERIMENTAL
- label
- Intervention - Genetics Update Platform plus standard genetic counselling
- description
- Arm Description: Participants in this intervention arm will be consented by the study coordinator and then use the Genetics Update platform to support the delivery of their updated genetic test results. Once their updated results are ready, participants will be notified via email and will use the patient platform to access their updated results and recommendations. All participants will have the option to request a meeting with a study genetic counsellor (GC) if needed. Participants who receive a pathogenic, likely pathogenic, or variant of uncertain significance as a result will have a mandatory virtual or telephone meeting with a genetic counsellor to discuss the result and follow up steps.
- interventionNames
- Behavioral: Genetics Update Platform plus standard genetic counselling
- type
- ACTIVE_COMPARATOR
- label
- Standard Genetic Counselling Only
- description
- Arm Description: Participants in the control arm will be consented by the study coordinator. Once their results are ready, participants will receive their genetic testing result report through a password protected file via email. The genetic counsellor will be notified once the email has been opened. Participants will have been given the password during their consent process verbally. Should they have misplaced this, they can contact the study coordinator to request the password. If the participant does not open the email to review results, they will be contacted by the study coordinator via phone. Participants who receive a pathogenic, likely pathogenic, or variant of uncertain significance as a result will have a mandatory virtual or telephone meeting with a genetic counsellor to discuss the result and follow up steps.
Eligibility
Eligibility (as posted)
- Sex
- All
- Minimum age
- 18 Years
Show eligibility criteria text
Inclusion Criteria: * Adult patients who have had germline genome sequencing as part of the Incidental Genomics (CTO #0819), Genetics Adviser (CTO #3400), or GENCOV (CTO #3302) trials and consented to be re-contacted for related research. Exclusion Criteria: * Individuals who are unable to provide consent to participate in the study will not be eligible. * Patients are unable to participate if they do not speak English or lack access to the internet or an electronic device.
References
Publications (0)
Data not yet available