# Virtual Research Assessment User Guide By PicnicHealth Mar 27, 2025 • 5 min read Participating in a virtual research assessment through a simple video call allows you to contribute to important research from the comfort of your home. Your time and effort help advance understanding of CIDP while providing you with valuable insights into your health. ## What to bring A tablet, phone, or laptop with a working camera, microphone, and stable internet connection. A quiet, distraction-free area with enough space to walk a few steps if applicable. A chair that you can use during any movements or tasks you’ll be asked to perform. The tripod mailed to you via Amazon. ## What to Expect Before your video call: **Book Your Assessment** Visit your to-do list on your PicnicHealth Research Dashboard or click the scheduling link sent to your email. _Note:_ _Search for “New task for the ORBIT-CIDP Study" to find the video call scheduling link._ **Receive Confirmation** Check your email for a confirmation with your scheduled video call time and instructions. On the day of your video call: **Click on Video Link** Join your personal video call using the link we sent by email, or text message, or find it on your [research dashboard](https://app.picnichealth.com/research). **Meet your nurse** A Registered Nurse (RN) will guide your virtual assessment, which will last about 30 minutes. **Complete the Physical Activity Assessment (INCAT)** The nurse will guide you through questions and, if needed, physical tasks to help researchers gain a deeper understanding of CIDP. **Complete the Movement Assessment (Optional)** If you participate, a nurse will guide you through three short recorded movement activities to complete as best you can: - **Chair Task** While seated with your arms crossed over your chest and hands on opposite shoulders, you’ll be asked to stand up, remain standing for 20 seconds, and then sit back down. - **Arm Movement Task** While seated with your arms resting at your sides, you’ll be asked to raise both arms out to the sides until they meet above your head, then lower them back to your lap. - **Finger Dexterity Task** While seated, raise your right hand with fingers extended. Touch your thumb to each fingertip in order, then reverse. Repeat with your left hand. **Recording:** Your research assessment may be recorded to ensure accurate data collection. If you participate in the optional Movement Assessment, it will also be recorded. These recordings may capture your voice and responses, but identifiable information like your face, name, or background will be removed to protect your privacy. ### FAQs **What is the Physical Activity Assessment?** The Physical Activity Assessment, also known as the INCAT, is a tool used to evaluate the level of disability caused by CIDP. It involves a series of questions and physical tasks (if needed) that help us understand your condition better. **What are the Movement Assessments?** You’ll complete three tasks: standing up and sitting down, moving your arms above your head, and touching your thumb to each fingertip. **Why are these virtual research assessments important?** This assessment helps researchers better understand CIDP, contributing to advancements in treatments and care. **Who do I contact if I have questions?** If you have any questions or concerns, please contact your study team at [help@picnichealth.com](mailto:help@picnichealth.com). **What should I wear for mobility assessments?** Wear comfortable clothing and footwear that allows you to move freely. **Can I reschedule if something comes up?** Yes, use the link in your confirmation email or contact the study team at the email above to reschedule. **Do I have to participate in the optional Movement Assessment?** No, the Movement Assessment is optional. However, if you choose to participate, it provides additional valuable information to the research team including to help better understand the effects of CIDP, help develop new methods to monitor disease evolution and treatments, and earns you an extra $30. **What do I need for the virtual assessment?** We recommend joining the virtual assessment in a quiet space with enough room to comfortably walk a few steps. We’ll mail you a tripod, and you’ll need a chair for the assessment. ## We know that every person's story is unique and deserves to be heard. Join our early breast cancer registry to be counted and share your story with research. ## Create a List 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. #### Ensure You Have the Appropriate Legal Status 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. #### Gather and Organize the Medical Records in One Place 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. #### Review the Medical Records to be an Informed Advocate 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. ## Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association ## 1. Build a support network. When 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. ## 2. Stay organized. 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. ## 3. Explore treatments and clinical trials. 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. ## 4. Make time for self-care. 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. ## Having trouble managing your loved one's medical records? Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth. #### LC-FAOD Odyssey: A Preliminary Analysis, presented at INFORM 2021 ##### Data from real-world medical records: (from 13 patients with LC-FAOD) - 16 yrs old Median age at enrollment - **38% Female** - **15 providers / patient** - **7.5 years of data / patient** ##### Data from patient-reported outcome (PRO) survey (from 13 patients with LC-FAOD) ## Learn more about contributing to IgAN research with PicnicHealth. ## A fully charged device (smartphone, tablet, or laptop) with a working camera, microphone, and stable internet connection. ## A quiet space that is free from distractions. ## Space to move in case you are briefly asked to stand or walk a few steps.