How HD Medical Data Impacts Ongoing Research

By 
PicnicHealth Team
November 1, 2022
Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

Huntington’s disease is a rare inherited disease that causes the progressive breakdown of nerve cells in the brain. No current treatments can alter the course of HD, which is why it’s so important to study the causes and early symptoms of the disease. This can lead to potentially preventing or helping to treat the disease for a better quality of life. Our aim is to help provide data necessary for the researchers in this field to do just that. 

PicnicHealth is partnered with Sage Therapeutics, a brain health company committed to developing novel therapies for disorders where there’s a high unmet need, to improve the research around Huntington’s Disease. Sage is committed to developing drugs that help patients living with debilitating brain disorders and are currently studying an orally administered investigational drug to understand its effect on cognitive symptoms in Huntington’s Disease. 

By understanding what leads to a diagnosis of HD, researchers can find ways to treat those early symptoms and potentially better treat the disease. By allowing your patient data to be shared with Sage Therapeutics, you’re providing de-identified medical records, claims, and patient outcomes that can aid in this research. Sage can help identify how treatments impact patients and what the cost of care is in order to optimize treatments to improve quality of life and cut overall costs.

In fact, here are all the ways that Sage’s research could impact the HD patient journey: 

  • Inform physicians to provide a higher level of care.
  • Raise awareness of signs and symptoms of HD for both physicians and those who may be diagnosed earlier. 
  • Help advance treatments for those who have been diagnosed to improve the quality of their lives. 
  • Inform policymakers and potential clinical trials to help find a cure.
  • Help patients get access to treatments earlier on in their journey.
  • Help empower patients and caregivers to better understand what an HD diagnosis does and doesn’t mean for their future. 

There is so much good, and so many potential outcomes, that can come from this research. Find out how you can help contribute the needed data to build the foundation for those that are diagnosed today and will be tomorrow.

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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

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Together, we can make a difference.

Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association

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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.

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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)

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However, it's important to consult with a healthcare provider or registered dietitian to determine the appropriate amount of protein for your individual needs. In general, a diet with moderate protein intake (about 0.8 grams per kilogram of body weight per day) is recommended for people with kidney diseases.

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