# CAHtalog: The Power of Medical Records in Research **CAHtalog: The Power of Medical Records in Research** is a brief presentation that highlights the CAHtalog registry – an effort sponsored by Neurocrine and supported by CARES and PicnicHealth. The CAHtalog registry is an exciting opportunity for the classic CAH community to have their stories captured in research through medical records, and advance care and treatment for classic CAH. ## 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. [Learn More](/content/breastcancer?utm_source=google&utm_medium=organic_search&utm_campaign=grace-ebc-treatment/index.html) ### 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. 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. ### 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. 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 More](/content/alzheimers-association/index.html) ## Together, we can make a difference. 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 you can turn to in times of need will pay dividends. ### 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. ### 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. ## 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. [Learn More](/content/program/alzheimers/index.html) #### 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) Stay informed about your health data and leverage it to improve the quality of care.