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Topic: ​ PAID COVID-19 Experiences Study Opportunity​ ($200)

Forum: Survey, Interview and Participant Requests: Need your Help! —

Research proposals and/or requests posted here by members have been reviewed and approved by the Moderator Team, but not associated with Breastcancer.org.

Posted on: Apr 13, 2021 11:01AM - edited Apr 19, 2021 04:01PM by Moderators

Moderators wrote:

Hello Everyone,

We're inviting our US-based community members to participate in the Breast Cancer and COVID-19 Experiences Study, conducted in partnership with Ciitizen (click HERE). This study will analyze patient-reported information from a study questionnaire along with secondary data from patient medical records to research the impact that the COVID-19 pandemic has had on people with breast cancer.

There are 2 parts to the Breast Cancer and COVID-19 Experiences Study:

  1. Share your Ciitizen Profile: Contribute your anonymous medical information to be analyzed as part of this research study. If you don't already have a profile with Ciitizen, you can set up an account HERE. They will gather and summarize all of your medical records in one place for you to have, and per your permission, use your de-identified information for this study to see how care has been impacted by the COVID-19 pandemic. Signing up takes around 5 minutes, and the service is no cost to you.
  2. Take the Study Survey: Complete the electronic survey to share your personal experience during the COVID-19 pandemic. You will receive a unique link to follow in order to anonymously fill out the study survey, which takes approximately 20 minutes to complete.

By completing both parts of the Study, you will receive $200 in compensation.

Sign up HERE.

Please reach out with any questions by emailing mjenkins@breastcancer.org, or private messaging the Breastcancer.org moderators.

Thanks so much for your help!
The Breastcancer.org Team

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Posts 1 - 25 (25 total)

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Apr 13, 2021 01:43PM 2019whatayear wrote:

I participated in this study. It was easy to do and I have rec'd my stipend. :-)

5/6/2019 IDC 2cm, micromet 1/9 nodes, BRCA2+, ER+, PR+, HER- BMX 6/2019, A/C & Taxol 2019, Radiation, BSO - preventative 2/2020, Letrozole 3/1/2020
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Apr 13, 2021 02:36PM Moderators wrote:

2019whatayear, thanks for sharing this!

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Apr 13, 2021 07:42PM karen1956 wrote:

How long out from diagnosis/treatment can you be to participate?

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Apr 14, 2021 11:59AM Kitkat703 wrote:

how long did it take you to complete this? Did you have to wait until all your requested medical info was received from your providers?

MBC Stage 1V, Have done chemo ;currently on Herceptin..Clean scan. Don't let that fool you. I was diagnosed in 4/2018. Dx 4/5/2018, DCIS/IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 5/20/2018 Other Targeted Therapy Tukysa (tucatinib) Hormonal Therapy Arimidex (anastrozole)
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Apr 14, 2021 02:16PM DivineMrsM wrote:

Moderators, I went so far in filling this out and then it asked for my photo ID which would be my license. Iam not sure I want to give that info for fear of identity theft. I trust you as Moderators to only recommend reliable, honest surveys like this, but it causes me some concern. Any advice?

found lump 12-22-10—ilc—er+/pr+/her2—stage iv bone mets—chemo~lumpectomy~radiation~arimidex—March 2019-ibrance/aromasin* —Sept 2019-verzenio* —March 2020-xeloda*
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Apr 14, 2021 03:50PM - edited Apr 15, 2021 02:20PM by Moderators

Karen: as long as you are still being followed by your doctor for a past breast cancer, you can participate

Divine: We do trust Ciitizen and we indeed would only offer services we deem safe. If you feel more comfortable, you can speak to a Ciitizen support person by phone using the number on the landing page.

Kitkat703, no, you don't need to wait.

We hope this helps. Please let us know if you have further questions!

--The Mods


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Apr 15, 2021 05:07PM ts542001 wrote:

thanks moderators for that response, i do trust you. i too was not comfortable giving out some of my personal information to them. i have started to fill this out several times, but always stopped when it came to my needing to give my information.

i will fill this out now.

Dx 3/2003, DCIS/IDC, Both breasts, <1cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 3/14/2003 Lumpectomy: Left, Right Dx 3/13/2019, IDC, Left, 1cm, Stage IB, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 4/7/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy Surgery Immunotherapy Radiation Therapy External: Bone Chemotherapy CMF Hormonal Therapy Femara (letrozole) Hormonal Therapy Aromasin (exemestane) Radiation Therapy External: Bone Chemotherapy CMF Targeted Therapy Ibrance (palbociclib)
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Apr 15, 2021 08:50PM cake8icing wrote:

note they do not accept Stage 0 patients. I confirmed with one of their consultants. He said they would update the information.

Dx 2/14/2020, DCIS, Left, 3cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 3/19/2020 Lymph node removal: Sentinel; Mastectomy: Left
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Apr 16, 2021 02:49PM Moderators wrote:

Thanks, ts542001!

cake8icing, thanks for sharing that.

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Apr 19, 2021 02:48PM Ndun wrote:

I have HUGE issues with this study. I was excited when I first saw this. I went through breast cancer treatment this year and was hospitalized for a week with COVID. I was a horrendous and terrifying experience. I was so grateful when I was sent the link to this study as it was finally an opportunity to talk about my experience and the honorarium is always helpful when medication costs are so high. I clicked on the link and shared my information only to be met with a pop up that said something like "sorry you don't qualify". I'm not even sure it said "sorry". No reason given. No information provided as far as resources that would be helpful to address the impact of the experience. Not even a phone number to call to talk to someone. The fine print also said something along the lines of "you might get money or we might just donate it to cancer in your name". I am cancer. We are cancer. I've donated my body to cancer this year! After shaking off the frustration of all that I immediately started receiving marketing emails. SO basically what this appears to me to be is a hook tossed out there with little more purpose that to gather contact info to sell/give to big companies so they can start flooding you with emails. This ethics of this study are appalling. For god's sakes, you're targeting people who went through cancer AND covid. Have a little compassion as to how awful this past year has been for this particular group.

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Apr 19, 2021 05:11PM Moderators wrote:

Hi Ndun,
We're really sorry that you had to go through cancer AND Covid this past year, and understand how terrifying this must have been. We're also sorry that you were frustrated with your experience trying to complete the study.In our posts, we say for people living in the US, and we think you may have been disqualified for that reason. We will try to make that clearer for others. There is a phone number, email address, and web conferencing option on the study page that you may have overlooked.

Under compensation, it reads "By completing both components of the study, you will earn compensation of $200, either by gift card or donation to Breastcancer.org." This means, upon completion, you are given the option of a gift card, or you can donate it to our organization. Breastcancer.org isn't aware of any marketing emails you might have received but will look into it. If you could, please forward a copy to our Community Director at mjenkins@breastcancer.org.

Warmly,

The Mods (edited)

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Apr 20, 2021 03:30PM Ndun wrote:

I received this through an email from you not from the community. I understand you had great intentions but your email said nothing about the study only being open to US patients. This would have been very helpful. Perhaps it's a change you could make before emailing it out again. Sharing the information I received via email:


As part of the Breastcancer.org community, you are eligible to enroll in a study to share your experiences living with breast cancer during the COVID-19 pandemic.

The Breast Cancer and COVID-19 Experiences Study will recruit approximately 500 people with breast cancer, 300 patients with metastatic breast cancer, and 200 patients with earlier-stage breast cancer. To be eligible, you only need to have been in treatment or surveillance during the pandemic. (link removed so I could post)

What's involved in participating?

  1. Set up your Ciitizen Profile. If you do not already have a Ciitizen account, click (link removed so I could share) to set up your free account, request your medical records, and provide consent to share your profile with researchers. Data shared from your Ciitizen profile does not contain any information that could be used to directly identify you.
  2. Complete an online survey. After your account is confirmed, you'll be sent a unique link to complete an online survey that will take approximately 20 minutes.
  3. Receive up to $200 compensation. You can earn $100 for sharing your anonymous data with researchers and $100 for completing the survey.
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Apr 20, 2021 03:38PM Moderators wrote:

Ndun, thank you for clarifying. We're so sorry for the miscommunication. We'll alert the team to be sure the requirements are clear in future emails.

Appreciate your help, once again.

--The Mods

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Apr 23, 2021 10:34AM - edited Apr 23, 2021 10:35AM by Octoberwind

It's been very difficult. I am a single, recently retired nurse. I'm close to my siblings and their children, but not physically close. All the normal supports from the hospital were non-existent and my own methods of support were severely restricted. My family couldn't come because of travel restrictions. Friends I expected to be supportive were not.

However, other friends stepped in and I found things that worked for me. I developed a daily routine of meals, exercise, fresh air, rest. I wasn't rigid about it; if something else came up, I was fine with skipping the schedule but it made the days go by.

Dx 7/2020, IDC, Right, 2cm, Grade 2, 0/3 nodes, ER+/PR-, HER2- Surgery 8/24/2020 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 9/30/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/3/2021 Whole-breast: Breast Hormonal Therapy Arimidex (anastrozole)
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Apr 23, 2021 12:24PM Moderators wrote:

Thank you for sharing, Octoberwind. Definitely having a routine -- even if it's simple -- is critical to navigating this crisis. We're glad you found one that worked for you!

--The Mods

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Apr 26, 2021 01:46PM TexasMama wrote:

Well, that was frustrating! I filled out the short form and they said I was eligible to participate. It took 15 minutes to enroll in Citizen because there was an issue with entering my physician. I then received an email saying that I'm not eligible. Huh? What a waste of my time!

Dx 10/11/2019, IDC, Both breasts, 3cm, Stage IIB, Grade 2, 2/12 nodes, ER+/PR+, HER2- Surgery 12/11/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 2/16/2020 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide) Radiation Therapy 5/18/2020 Whole-breast: Breast, Lymph nodes
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Apr 26, 2021 02:07PM 2019whatayear wrote:

In case anyone is not familiar with how paid research or marketing studies work is that they have certain demographics they are looking to fill to get the best info for the study. Often you have to complete a screener and won't match what is needed because they already have enough X amount of participants. When you do qualify then the stipends are pretty good.

For anyone who has participated and is wondering how long before you should get your stipend- I saw this study initially on twitter and completed and submitted all my info via ciitizen on March 14th and on April 8th I rec'd the $ for participation, which I used to pay a couple of bills

5/6/2019 IDC 2cm, micromet 1/9 nodes, BRCA2+, ER+, PR+, HER- BMX 6/2019, A/C & Taxol 2019, Radiation, BSO - preventative 2/2020, Letrozole 3/1/2020
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Apr 26, 2021 02:24PM TexasMama wrote:

I filled out the screener and they said I was eligible. It was only after I gave them access to my medical records and a copy of my photo ID that they said that I wasn't eligible. Honestly, I'm sick to my stomach right now. This feels dishonest and unethical.

Dx 10/11/2019, IDC, Both breasts, 3cm, Stage IIB, Grade 2, 2/12 nodes, ER+/PR+, HER2- Surgery 12/11/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 2/16/2020 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide) Radiation Therapy 5/18/2020 Whole-breast: Breast, Lymph nodes
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Apr 26, 2021 02:34PM - edited Apr 26, 2021 02:54PM by Moderators

TexasMama, we'll help resolve this! Can you Private Message us and let us know the email you used with them? There really isn't a reason you would be turned away, unless you are living outside of the US. Have you called the number Ciitizen provided?


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Apr 26, 2021 06:22PM TexasMama wrote:

Moderators, thank you for contacting me and helping resolve this. I emailed them several hours ago and called them and left a message 30 minutes ago. I'll let you know when I receive a response.

I have visited Ciitizen.com and read through their faqs. Am I correct in my understanding that when we register, we are not only giving Ciitizen permission to access our medical records for this study, but also for future studies from other organizations?

Dx 10/11/2019, IDC, Both breasts, 3cm, Stage IIB, Grade 2, 2/12 nodes, ER+/PR+, HER2- Surgery 12/11/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 2/16/2020 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide) Radiation Therapy 5/18/2020 Whole-breast: Breast, Lymph nodes
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Apr 27, 2021 08:32AM GAMomma wrote:

I am not sure if this is still active. I stopped posting here due to deep depression. I did have resonstruction but my implants were malformed and I had capsular contraction in 1. I opted to go flat.

Dx 1/1/2017, DCIS, Right, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER+/PR+ Surgery 1/16/2017 Mastectomy: Left, Right
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Apr 29, 2021 02:25PM Moderators wrote:

Dear GAMomma,

We are so sorry that you have been dealing with depression. We are very glad that you have reached out again to connect with other members. This particular topic while active is promoting a Breast Cancer and Covid 19 Experience study. Perhaps we can help you to connect to another topic where you can share your situation and get support from others. Let us know what might be helpful to you. Send us a private message if you prefer and we can help direct you to active topics that match your current needs.

The MOds

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Apr 30, 2021 03:30AM Olma61 wrote:

just want to say I signed up for this, have taken the survey and received my gift within 48 hours of completion

Thank you for the opportunity

10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/29/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/29/2019 External: Bone
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Apr 30, 2021 10:08AM Moderators wrote:

Olma61, glad it worked out!

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May 2, 2021 01:12AM karen1956 wrote:

I completed the survey it was easy to do.

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,

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