Terminal CancerNCT05222308
Advanced Planning for Online Accounts and Data
A study testing Post-Mortem Plan in people with Terminal Cancer and Metastatic Cancer, run by University of Colorado, Denver.
Trial summary
The proposed research consists of engagements with terminal cancer patients and their friends and family as they engage in end-of-life planning. Read more about this study
- Who is it for?
- Ages 18 to 100 yearsHealthy volunteers can take part
- Conditions the study is for
- Terminal Cancer, Metastatic Cancer
- What is being tested?
- Post-Mortem Plan
- Could I receive a placebo?
- No, everyone receives an active treatment
- How many people
- 0 participants
- Where
- No sites listed yet
- Study dates
- 17 Sep 2021to 27 Sep 2024
- Phase
- Interventional
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 to 100 years
- All sexes
- Healthy volunteers accepted
- Adult, Older adult
Who may be able to join
- Life-limited adults diagnosed with metastatic cancer who have online accounts and data.
- Adult family/loved ones of the diagnosed adult who are willing to participate in planning activities.
Who cannot join
- -
About this study
Official title: Advanced Planning for Online Accounts and Data of Patients With Metastatic Cancer
The proposed research consists of engagements with terminal cancer patients and their friends and family as they engage in end-of-life planning.
Read the detailed description
Through personal interviews, the Investigator will identify end-of-life needs/wishes. The Investigator will engage in value elicitation activities to identify both what the values are that should inform the work with the participant, as well as the source of values and the agency people have in relationship to the participant.
In many cases, participants will have already engaged in versions of these conversations focused on other domains in their life (e.g., finances, funerary wishes, etc.). As such, the interviews will also identify how wishes related to online accounts and data align with wishes from other domains.
Based on needs identified during the previous stage, the investigators will support patients and networks in articulating a set of requests and preferences, and work with participants to develop and implement a plan to fulfill these requests. Throughout this stage the investigator's focus is on how participants' high-level wishes can be translated into specific technical practices and features, a challenge identified in prior work. Focusing on this translation will allow the study team to develop post-mortem plans for the participants while also systematically identifying types of breakdowns that can be addressed in future design research. The study team anticipate many requests will require the study team to investigate technical and policy feasibility. For example, a request that next of kin be able to have full access to an account may not be supported by that platform, requiring the study team to consider workarounds and their viability over time. The study team will ideate on a variety of possible solutions, presenting viable options to participants. For each request, the study team will document the details including challenges to fulfilling the request, possible solutions, and the fragility of those solutions should there be changes over time to technology (e.g., passwords being replaced by 2-factor authentication) or social circumstances (e.g., an individual's willingness to perform a specific action). This documentation will both help aid the participant in making choices, while also allowing the study team to holistically identify common shortcomings in technology design related to post-mortem planning. Based on the articulated requests, the study team will develop and present a set of draft plans to the participant and their network and discuss the merits of each and potential trade-offs. The study team will then support the participant and network as a plan is selected, soliciting feedback from the participants about each option.
Next, participants and the participants' networks will need to perform some amount of work to make preparations and support the plan (e.g., collecting usernames and passwords, adding instructions to a will, setting up a Legacy Contact on Facebook or a designated contact on google). The study team will support the participant through this process, taking note of tasks that are confusing, technically difficult or impossible, or especially laborious. Engagement during this process will allow participants to make the best possible preparation, while allowing the study team to note problems that should be addressed in our Stage 1 and 2 processes, the specific participant's plan, or with post-mortem technology more broadly.
After having completed post-mortem preparations, the study team will continue to support participants with changes the participant may wish to make to the plan as social and technical circumstances evolve. The study team will check in with participants at regular intervals based on their preferences and guidance from their oncologist. Additionally, participants can contact the study team at any time with questions or to request help.
- Conditions
- Terminal Cancer, Metastatic Cancer
- Being tested
- Post-Mortem Plan
- Medical subject headings
- Neoplasm Metastasis
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
Post-Mortem PlanOther
Following the death of the terminally ill participant, investigators will work with networks as the wishes of the deceased are executed. Continued engagement at this point will allow us to provide support to the network during a difficult period or time while also identifying shortcomings in our plans and systemic challenges to postmortem planning. Working with those who are grieving is a delicate proposition, but one with which my students and I have extensive experience.
| Study group | Role | What they receive |
|---|---|---|
| Post-Mortem Plan | Other | Following the death of the terminally ill participant, investigators will work with networks as the wishes of the deceased are executed. Continued engagement at this point will allow us to provide support to the network during a difficult period or time while also identifying shortcomings in our plans and systemic challenges to postmortem planning. Working with those who are grieving is a delicate proposition, but one with which my students and I have extensive experience. Receives: Other: Post-Mortem Plan |
What is being measured
The primary outcome is the main question the study is designed to answer.
Determine best practices for supporting participants
The investigator will use interviews to develop a broad understanding of the terminal patient, the network, and the relevant accounts and data. During interviews with the terminally ill participant, the study team will seek to develop an understanding of the participant as a person, the network and its key members, and establish a shared set of expectations. The investigator anticipates members of the patient's social network will be involved during this interview.
Through personal interviews, the study team will identify end-of-life needs and wishes. The study team will engage in value elicitation activities to identify both what the values are that should inform the work with the participant, as well as the source of values and the agency people have in relationship to them. In many cases, participants will have already engaged in versions of these conversations focused on other domains in their life (e.g., finances, funerary wishes, etc.).
Measured: 5 years
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted3 Feb 2022
- Study start17 Sep 2021
- Primary completion27 Sep 2024
- Study completion27 Sep 2024
Why it stopped: No enrollment
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Terminal CancerStudies of the same condition, open and under way.
- More trials run by University of Colorado, DenverThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Interventional
- Phase
- Phase N/A
- Primary purpose
- Supportive care
- Allocation
- Not applicable
- Intervention model
- Single group
- Model description
- This study aims to identify the challenges that online accounts and data present at the end of life. This study will engage life-limited cancer patients through longitudinal qualitative and technology design methods (action research, contextual inquiry, and participatory design) to: 1. empirically identify challenges that death presents for users; and 2. develop and validate strategies for end-of-life planning related to online accounts and data that honor human dignity while addressing the challenges and constraints of technology design. Investigors will engage patients and their family/loved ones in a consulting and supportive role to: 1. identify their needs and challenges, 2. develop and implement an end-of-life plan, and 3. support family/loved ones with the execution of this plan after the patient dies.
- Masking
- None (open label)
- Enrolment
- 0 participants (actual)
Sponsor and investigators
- Lead sponsor
- University of Colorado, Denver
- Sponsor type
- University, hospital or other
- Collaborators
- U.S. National Science Foundation
- Responsible party
- Sponsor
- Investigators
- Jed Brubaker, Principal investigator, University of Colorado, Boulder
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT05222308
- Sponsor's protocol ID
- 21-3375.cc
- Status last verified
- Jul 2025
- First submitted
- 27 Dec 2021
- Last updated
- 8 Jul 2025
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- No: IPD will not be shared, in accordance with IRB and ethics requirements.
Study at a glance
From the registry record, last updated by the sponsor on 8 Jul 2025. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Advanced Planning for Online Accounts and Data of Patients With Metastatic Cancer
- ClinicalTrials.gov ID
- NCT05222308
- Acronym / sponsor ID
- 21-3375.cc
- Conditions
- Terminal Cancer, Metastatic Cancer
- Study type
- Interventional
- Recruitment status
- WithdrawnReason stopped: No enrollment
- Enrolment
- 0 participants (actual)
- Lead sponsor
- University of Colorado, DenverUniversity, hospital or other
- Collaborators
- U.S. National Science Foundation
- Study start
- 17 Sep 2021 (actual)
- Primary completion
- 27 Sep 2024 (actual)
- Study completion
- 27 Sep 2024 (actual)
- First posted
- 3 Feb 2022 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
The proposed research consists of engagements with terminal cancer patients and their friends and family as they engage in end-of-life planning.
Detailed description
Through personal interviews, the Investigator will identify end-of-life needs/wishes. The Investigator will engage in value elicitation activities to identify both what the values are that should inform the work with the participant, as well as the source of values and the agency people have in relationship to the participant.
In many cases, participants will have already engaged in versions of these conversations focused on other domains in their life (e.g., finances, funerary wishes, etc.). As such, the interviews will also identify how wishes related to online accounts and data align with wishes from other domains.
Based on needs identified during the previous stage, the investigators will support patients and networks in articulating a set of requests and preferences, and work with participants to develop and implement a plan to fulfill these requests. Throughout this stage the investigator's focus is on how participants' high-level wishes can be translated into specific technical practices and features, a challenge identified in prior work. Focusing on this translation will allow the study team to develop post-mortem plans for the participants while also systematically identifying types of breakdowns that can be addressed in future design research. The study team anticipate many requests will require the study team to investigate technical and policy feasibility. For example, a request that next of kin be able to have full access to an account may not be supported by that platform, requiring the study team to consider workarounds and their viability over time. The study team will ideate on a variety of possible solutions, presenting viable options to participants. For each request, the study team will document the details including challenges to fulfilling the request, possible solutions, and the fragility of those solutions should there be changes over time to technology (e.g., passwords being replaced by 2-factor authentication) or social circumstances (e.g., an individual's willingness to perform a specific action). This documentation will both help aid the participant in making choices, while also allowing the study team to holistically identify common shortcomings in technology design related to post-mortem planning. Based on the articulated requests, the study team will develop and present a set of draft plans to the participant and their network and discuss the merits of each and potential trade-offs. The study team will then support the participant and network as a plan is selected, soliciting feedback from the participants about each option.
Next, participants and the participants' networks will need to perform some amount of work to make preparations and support the plan (e.g., collecting usernames and passwords, adding instructions to a will, setting up a Legacy Contact on Facebook or a designated contact on google). The study team will support the participant through this process, taking note of tasks that are confusing, technically difficult or impossible, or especially laborious. Engagement during this process will allow participants to make the best possible preparation, while allowing the study team to note problems that should be addressed in our Stage 1 and 2 processes, the specific participant's plan, or with post-mortem technology more broadly.
After having completed post-mortem preparations, the study team will continue to support participants with changes the participant may wish to make to the plan as social and technical circumstances evolve. The study team will check in with participants at regular intervals based on their preferences and guidance from their oncologist. Additionally, participants can contact the study team at any time with questions or to request help.
Study design
- Primary purpose
- Supportive care
- Allocation
- Not applicable
- Intervention model
- Single group
- Masking
- None (open label)
- Number of arms
- 1
- Model description
- This study aims to identify the challenges that online accounts and data present at the end of life. This study will engage life-limited cancer patients through longitudinal qualitative and technology design methods (action research, contextual inquiry, and participatory design) to: 1. empirically identify challenges that death presents for users; and 2. develop and validate strategies for end-of-life planning related to online accounts and data that honor human dignity while addressing the challenges and constraints of technology design. Investigors will engage patients and their family/loved ones in a consulting and supportive role to: 1. identify their needs and challenges, 2. develop and implement an end-of-life plan, and 3. support family/loved ones with the execution of this plan after the patient dies.
| Arm | Type | Receives |
|---|---|---|
| Post-Mortem Plan | Other | Other: Post-Mortem PlanFollowing the death of the terminally ill participant, investigators will work with networks as the wishes of the deceased are executed. Continued engagement at this point will allow us to provide support to the network during a difficult period or time while also identifying shortcomings in our plans and systemic challenges to postmortem planning. Working with those who are grieving is a delicate proposition, but one with which my students and I have extensive experience. |
Who may qualify
- Ages
- 18 to 100 years
- Sex
- All
- Healthy volunteers
- Accepted
- Age groups
- Adult, Older adult
Key inclusion criteria (2 listed)
- Life-limited adults diagnosed with metastatic cancer who have online accounts and data.
- Adult family/loved ones of the diagnosed adult who are willing to participate in planning activities.
Key exclusion criteria (1 listed)
- -
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| Post-Mortem PlanFollowing the death of the terminally ill participant, investigators will work with networks as the wishes of the deceased are executed. Continued engagement at this point will allow us to provide support to the network during a difficult period or time while also identifying shortcomings in our plans and systemic challenges to postmortem planning. Working with those who are grieving is a delicate proposition, but one with which my students and I have extensive experience. | Other | Post-Mortem Plan |
Primary outcome
Determine best practices for supporting participants
Time frame: 5 years
The investigator will use interviews to develop a broad understanding of the terminal patient, the network, and the relevant accounts and data. During interviews with the terminally ill participant, the study team will seek to develop an understanding of the participant as a person, the network and its key members, and establish a shared set of expectations. The investigator anticipates members of the patient's social network will be involved during this interview. Through personal interviews, the study team will identify end-of-life needs and wishes. The study team will engage in value elicitation activities to identify both what the values are that should inform the work with the participant, as well as the source of values and the agency people have in relationship to them. In many cases, participants will have already engaged in versions of these conversations focused on other domains in their life (e.g., finances, funerary wishes, etc.).
Results and safety
The study was withdrawn before enrolling participants, so there are no results.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 8 Jul 2025.
- Individual participant dataSharing planned: No. IPD will not be shared, in accordance with IRB and ethics requirements.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
Jed Brubaker principal investigator
University of Colorado, Boulder
Questions about this trial
What is this clinical trial studying?
A study testing Post-Mortem Plan in people with Terminal Cancer and Metastatic Cancer, run by University of Colorado, Denver.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 2 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: withdrawn, as of the sponsor's last update on 8 Jul 2025. Status can change between updates, so confirm with the study contact before making plans.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study was withdrawn before enrolling participants, so there are no results.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Determine best practices for supporting participants (time frame: 5 years). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 8 Jul 2025.