The Cystinosis Research Network is sharing the following research opportunity from Beacon Consulting Group, which is seeking input from the cystinosis community about their experiences with eye treatments and eye care. If eligible, your perspective can help provide valuable insight into the real-world experience of cystinosis eye care. To learn more about the survey and how to participate, details are provided below or simply click here to begin.
Living with cystinosis — or caring for someone who does — comes with daily experiences that only the community truly understands. The small routines, the things that work, the things that are harder than they should be: these details matter, and they often go unheard. That’s why we’re reaching out. We’re inviting you to take part in a short, confidential survey about the real-world experience with ophthalmic treatments for the eyes and related effects of cystinosis. It’s open to eligible patients 18 years and older as well as parents and caregivers who help make day-to-day treatment decisions.
What the survey is about
The survey asks about everyday life with cystinosis and the treatments used to care for the eyes — what your routine looks like, what’s working well, where you run into challenges, and what kind of support would make the biggest difference. There are no right or wrong answers. We simply want to understand your experience in your own words.
Why your participation matters
When researchers and care teams hear directly from patients and caregivers, they gain insights that no chart or clinical record can provide. Your answers help build a clearer, more honest picture of what living with this condition is actually like — the kind of understanding that can inform better support, better information, and better care for our whole community. Because cystinosis is rare, every single response carries real weight. Your voice genuinely counts.
What to expect
- The survey takes about 15 minutes to complete.
- It’s completely confidential — your responses are combined with others and reported only as a group. Nothing is linked to your name.
- You can take it online, at your own pace, on a phone, tablet, or computer. Note, if you cannot finish the survey in one sitting, just come back using the same device and browser and it should resume where you left off. Otherwise, you’ll have to restart the survey.
- A short set of opening questions will confirm the survey is a good fit for your situation.
- For your participation, you will receive $30 in the form of an Amazon or Visa gift card. [Please note that only respondents who complete the entire 15-minute survey will receive compensation.]
Note this survey is for research purposes only and is not a substitute for medical advice. For any questions about your own care or treatment, please speak with your healthcare provider.
Ready to share your experience? Please click the link at the top of this article.