This guide covers everything you need to prepare for your NAVIGATE-CIDP Study patient interview — from what to expect to how to join. The interview is a relaxed, one-on-one virtual conversation about your experience with Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP). It takes about about 90 minutes, with time for breaks as needed, and you can do it by video or phone — whichever works best for you.
There’s nothing to prepare and nothing to get right. Just show up as you are.
Questions? Reach out at navigate@picnichealth.com or (415) 680-3085.
Please have the following ready to make sure your visit goes smoothly:
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No problem — just use the rescheduling option in your Research Dashboard to find a new time. Life happens and there’s no penalty for rescheduling.
Nothing at all. You don’t need to review records, study anything, or plan what to say. Just come as you are.
Yes. The recording and any notes stay within the PicnicResearch team. When we analyze the interviews and write a report, findings are grouped across all participants and de-identified (meaning your name and personal details, like your date of birth, are removed) before being shared. The sponsor does not receive your recording or anything that identifies you individually.
If you report a medical event as a result of taking the sponsor's treatment, we may need to provide limited, identifiable information (like details of the event and your name) to the sponsor to satisfy FDA regulations and reporting requirements.
Absolutely. You can stop at any point, for any reason or no reason at all. You don’t need to explain. Stopping early won’t affect your NAVIGATE-CIDP participation.
Join our early breast cancer registry to be counted and share your story with research.
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List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
Learn MoreWhen you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.
There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
We hope you found this session informative! Sign up for PicnicHealth’s Alzheimer’s research program below.
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Explore the essential takeaways from Victoria's Webinar, along with some resources that she shared.
Before your video call:
On the day of your video call:
Receive up to $55 for your participation:
You’ll receive an email from Celestra Health with your account details. Follow those steps to set up your account.
Before your interview:
Use the scheduling link on your PicnicHealth Research Dashboard or the link sent to your email.
You’ll receive an email with your interview time and instructions for joining the call.
On the day of your interview
Click the Zoom link sent to you by email or text message, or use the link available on your PicnicHealth Research Dashboard.
You’ll receive $150 for completing your visit. Available to claim in the Rewards section of your PicnicHealth account after your interview.
If you have questions before, during, or after your interview, we’re here.
