Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.
For rare diseases, it’s critical to learn more about a condition before effective trials can be developed. That’s where a “natural history study” comes in.
A natural history study is a medical research study that focuses on the disease progression and patient population. The name “natural history” refers to how a disease develops without any treatment.
The goal of a natural history study is to get a big picture view of how a disease develops, to improve understanding of that condition. AllStripes can help organizations create high-quality natural history studies that can feed research for years to come.
When a natural history study is conducted, a range of information on the patient experience is collected. This can include symptoms, test results, physical signs, imaging, patient age, genetics and quality of life, as well as on any other factor relevant to the disease and its development.
Differences between groups of patients within one condition may emerge from a natural history study. This can help researchers identify important disease subtypes and better understand the patient population.
Depending on the disease, the period of time covered in a natural history study may start before the disease begins, through a period when symptoms have not developed yet, then through the different stages of disease.
Natural history studies are particularly important in rare disease research because so little is known about so many rare diseases. Without this information, doctors and patients may find themselves unprepared to manage the disease and unsure of what to expect as the disease progresses.
Natural history studies document the current standard of care for patients and may uncover ways it can be improved. Patient subgroups once recognized may benefit from subgroup specific management or treatment. Centers of excellence specializing in the disease may be located through the study.
Natural history studies can also identity new, or confirm the importance of known, disease markers such as genetic variants, or molecules in body tissues and fluids. These findings may be used to help diagnose the disease, provide a prognosis or as a basis for drug development.
Natural history studies help researchers design clinical trials well suited to the patient population and disease.
The information they provide allows researchers to determine the appropriate entry criteria, time intervals for data collection and duration of the trial. It also helps them decide which variables or outcomes they should measure to assess whether a drug or treatment has been successful. An in-depth understanding of the disease can be useful for choosing the drug dose and early recognition of safety issues.
In a clinical trial patients are usually divided into two groups: one that receives the trial drug or treatment and another, called the control group, that receives a placebo.
This can raise ethical concerns when the disease is serious and has no effective treatment other than potentially that in the trial. In special circumstances where the course of the disease is predictable and the effect of the treatment is dramatic a natural history study may be used to provide the control group.
This is known as a historically controlled trial and in this type of trial all patients receive the drug or treatment being investigated.
Disease registries are a frequent source of data for natural history studies, but often the information in a registry is exclusively patient-reported and is not audit-trailed in the way it would need to be in order to be considered research-grade or FDA-grade. AllStripes collects records on behalf of patients, for free, enabling us to audit trail everything and set a patient community up for future uses of that important natural history information, such as in lew of a placebo group.
Natural history studies provide a foundation for further research. When designing and conducting a natural history study it is important to consider possible future uses for the study information.
Data reliability can be compromised by inconsistent measurement procedures, irregularly recorded data, missing data and inconsistent use of medical terminology. In multinational natural history studies it is also important to take into account the impact of language and cultural differences. If the data collected is not of sufficient quality its potential uses will be limited.
At AllStripes we are focused on creating a foundation of knowledge about rare diseases and one of the primary ways to achieve this is through a high-quality natural history study. If you represent an organization interested in conducting a natural history study, please email us at community@allstripes.com for more information.
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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.
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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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