Overview
Long-chain Fatty Acid Oxidation Disorders (LC-FAOD) are a group of rare conditions that impair the body’s metabolism from breaking down certain fats from food into energy. Although there are an estimated 2,000-3,5000 people living with LC-FAOD in the U.S., researchers have limited data on how LC-FAOD progresses overtime and how it is managed in the real world.
This is why Ultragenyx Pharmaceutical and PicnicHealth are partnering on LC-FAOD Odyssey, a new type of patient-first research that uses the anonymous data from medical records to better understand the day-to-day challenges of living with LC-FAOD. Understanding how a disease is managed and treated and the effects of these approaches in the real-world, combined with understanding individual experiences based on patient-reported surveys, can help address some important questions that could improve the future quality of care.
Preliminary insights
Ultragenyx and PicnicHealth recently presented preliminary data at the International Network for Fatty Acid Oxidation Research and Management (INFORM) LC-FAOD conference (October 27 - 28, 2021). From August 2020 - August 2021, thirty three (33) patients enrolled into the study. Some of the data is summarized below, and the full poster can be found here https://informnetwork.org/inform-families/:
Conclusions
These preliminary results from the LC-FAOD Odyssey demonstrate the power of linking patient medical records and patient reported outcomes. The data helps researchers understand how complex LC-FAOD care is, with multiple providers, care sites, and management strategies.
"I founded PicnicHealth after managing my own Crohn's Disease diagnosis," said Noga Leviner, co-founder and CEO of PicnicHealth. "We quickly realized we were actually solving a much bigger problem by turning each patient's messy, nonuniform medical records into structured data. The result not only helps patients directly but it also really moves the needle for research - which is demonstrated by these early results from LC-FAOD Odyssey."
“We’re excited to see these early results from LC-FAOD Odyssey that showcase the power of taking a patient-centric approach to LC-FAOD research,” said Nina Thomas, Vice President of Global HEOR & Epidemiology at Ultragenyx Pharmaceutical.
Moving forward, the LC-FAOD Odyssey team is looking for additional volunteers living with LC-FAOD to join the study and contribute their anonymized data to research. By working together, patients, Ultragenyx, and PicnicHealth can help change the future of LC-FAOD research.
Learn more and sign up for LC-FAOD Odyssey at picnichealth.com/lcfaod. If you have any questions, please email PicnicHealth at [email protected].
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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)
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Explore the essential takeaways from Victoria's Webinar, along with some resources that she shared.
