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| Name | Class |
|---|---|
| Breast Cancer Research Foundation | OTHER |
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This research study is piloting a new internet-based research tool (YES portal). The main purpose of this pilot study is to test the web-based interface.
This study is being done to pilot a web-based research intervention tool. The investigators hope that by piloting it with the participants they can improve the tool and the other processes. The main purpose of this pilot study is to test the web-based interface, the participant's engagement with the platform, and the recruitment procedures. This initial pilot study will inform the design of a larger study intended to monitor common symptoms and behavior, and to provide supportive care information and research opportunities in an iterative manner for young women who have been diagnosed with breast cancer using the YES portal, built for smartphones, tablets, and computers.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| NEWLY DIAGNOSED | Experimental | Participants will track their symptoms with weekly and monthly standard surveys to monitor for symptoms. The YES portal is designed to collect and assess participants' toxicities and symptoms, as well as informational needs in between visits with their clinician |
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| SURVIVOR | Experimental |
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| LIVING WITH ADVANCED DISEASE | Experimental |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| YES portal | Other | The YES portal is designed to collect and assess participants' toxicities and symptoms, as well as informational needs in between visits with their clinician |
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| Measure | Description | Time Frame |
|---|---|---|
| Frequency of logging into the portal. | To measure the number of times participants engage with the portal using log in data collected from back-end of portal. | 2 years |
| Time spent in the portal. | To summarize the number of hours/minutes the participant spent using portal through data collected from back-end of portal. | 2 years |
| Time spent responding the survey. | To summarize the number of hours/minutes the survey takes to complete through data collected from back-end of portal. | 2 years |
| Frequency of information downloads. | To measure the number of times participants download the resource sources provided through data collected from back-end of portal. | 2 years |
| Participant-reported utility of the portal. | Investigator developed questions will be used to assess the utility of the portal including the perceived usefulness of portal in addressing symptoms and needs and ease of use. | 2 years |
| Participant-reported recommendations for improving the portal. | Investigator developed questions asking participants for feedback pertaining to ways to improve the portal and processes. | 2 years |
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Inclusion Criteria:
Exclusion Criteria:
N/A
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| Name | Affiliation | Role |
|---|---|---|
| Ann H. Partridge, MD | Dana-Farber Cancer Institute | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Dana Farber Cancer Institute | Boston | Massachusetts | 02215 | United States |
The Dana-Farber / Harvard Cancer Center encourages and supports the responsible and ethical sharing of data from clinical trials. De-identified participant data from the final research dataset used in the published manuscript may only be shared under the terms of a Data Use Agreement. Requests may be directed to: [contact information for Sponsor Investigator or designee]. The protocol and statistical analysis plan will be made available on Clinicaltrials.gov only as required by federal regulation or as a condition of awards and agreements supporting the research.
Data can be shared no earlier than 1 year following the date of publication.
BCH - Contact the Technology & Innovation Development Office at www.childrensinnovations.org or email TIDO@childrens.harvard.edu BIDMC - Contact the Beth Israel Deaconess Medical Center Technology Ventures Office at tvo@bidmc.harvard.edu BWH - Contact the Partners Innovations team at http://www.partners.org/innovation DFCI - Contact the Belfer Office for Dana-Farber Innovations (BODFI) at innovation@dfci.harvard.edu MGH - Contact the Partners Innovations team at http://www.partners.org/innovation
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| ID | Term |
|---|---|
| D001943 | Breast Neoplasms |
| ID | Term |
|---|---|
| D009371 | Neoplasms by Site |
| D009369 | Neoplasms |
| D001941 | Breast Diseases |
| D012871 | Skin Diseases |
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| D017437 |
| Skin and Connective Tissue Diseases |