COA Connected Community

COA Connected Community
COA is gathering community feedback to understand what matters most to individuals affected by chromophobe RCC, including lifestyle and wellness factors such as how people use wearables and what kinds of research questions feel most urgent.

This survey is for community planning and future program/grant planning. This is not a research study. Questions are optional and you can skip anything you prefer not to answer.

Time: ~2–5 minutes. If you choose to share your email at the end, we’ll only use it to notify you about opportunities you opt into.
Personal Information

Your answers help us build support and resources that fit people at different stages and locations.
Have you been diagnosed with chromophobe RCC?

YesNoOther / prefer not to say
What year were you diagnosed?
Gender
What was your age at diagnosis?

18–2526–3435–4546–5455–6465–7475+Prefer not to say
What stage were you diagnosed at?

Stage 1Stage 2Stage 3Stage 4
Have you had a recurrence or has your cancer spread to other locations in the body (metastatic)?

YesNo
What country do you live in?
Wearables + Wellness
Do you currently use a wearable device to track health metrics?

YesNo
Which wearable(s) have you used? (Select all that apply)

Apple WatchOura RingFitbitGarminWhoopSamsung Galaxy WatchOther
How long have you tracked health metrics with a wearable?

Less than 6 months6–12 months1–3 years3+ yearsNot sureOther
What has prevented you from using a wearable (or using it more)? (Select all that apply)

Cost / too expensivePrivacy concernsToo hard to set up or useI don’t see the valueIt increases my anxietyPhysical comfort / sensory issuesNot sure what to track or how to interpret itOther (write-in)Not applicable (I use one without issues)Other
What has prevented you from using a wearable (or using it more)? (Select all that apply)

Cost / too expensivePrivacy concernsToo hard to set up or useI don’t see the valueIt increases my anxietyPhysical comfort / sensory issuesNot sure what to track or how to interpret itNot applicable (I use one without issues)Other
Which areas do you use your wearables to help manage or monitor?

Sleep / fatigue / recoveryActivity / fitnessHeart rate / heart healthDizziness, orthostatic, or autonomic symptoms (e.g., POTS-like)Autoimmune / inflammation-related symptomsTracking symptoms during or after treatment (e.g., energy, recovery)General wellness / curiosityPrefer not to answerOtherNone of the above
What matters most
Which feels most important to you for chRCC funding to support?

I want practical support now (resources, guidance, peer support, community programs)I want research progress (fueling discoveries for better treatments in the future)I want both equallyNot sureOther
If you could choose one area for support or research focus, what would matter most to you? (Choose one)

Lifestyle changes (diet/exercise/sleep/stress)Preventive treatment (medication/cancer therapy)More personalized monitoring (wearables, biomarker discovery, scans schedules based on risk)Not sureOther
Interest in research participation and donation
In general, would you be interested in hearing about future research opportunities (if they become available)?

YesNo
If opportunities become available, which would you consider contributing? (Select all that apply)

Completing surveys/interviews about symptoms and quality of lifeSharing de-identified medical record info (e.g., pathology report, imaging reports, treatment history)Sharing wearable summaries/exports (only if I choose to)Providing a blood sampleProviding a urine sampleAllowing use of leftover tumor tissue from a future surgery/biopsy (if a procedure happens as part of my care)Exploring whether archived tumor tissue from a past surgery/biopsy could be used (if available at my hospital)Participating in a clinical study/trial (if appropriate)I’m not interested right nowPrefer not to say
Would you like to be notified if relevant opportunities become available (wearable programs, research studies, donation pathways)?

YesNoOther
COA updates (events/programs/webinars/support groups)
Have you participated in any COA programs or events? (Select all that apply)

Coffee with Chromies (support group)Faces of Chromophobe (story/blog series)Chromophobe Kidney Cancer DayGiving Tuesday fundraiserCOA webinar(s) / education event(s)I follow COA, but haven’t participated yetThis is my first time hearing about COAPrefer not to answer
Would you like COA to email you about upcoming support groups (Coffee with Chromies), webinars, events, and program updates?

YesNo
What research questions or topics feel most important to you in chromophobe kidney cancer?
Contact information

We’ll only use this contact information to send the email updates you opted into above.
Last Name
First Name
Email
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COA Connected Community

Personal Information

Wearables + Wellness

What matters most

Interest in research participation and donation

COA updates (events/programs/webinars/support groups)

Contact information