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We spoke with Rhonda, an IBM patient and AllStripes Ambassador, about her participation in IBM research and how other patients can get more involved.
Since her diagnosis in 2015, Rhonda has been involved in multiple efforts to advance research for IBM, which currently has no treatment. She explains that she likes being part of the solution, and hopes to encourage more IBM patients to do the same.
Rhonda described a few of the ways she, and other IBM patients, are making an impact through participating in research.
AllStripes is not a traditional patient registry — it is a rare disease research platform that can complement the work a rare disease community is already doing to advance research.
Rhonda volunteered to become an AllStripes Ambassador after the IBM research program was launched in partnership with Myositis Support & Understanding and Cure IBM. By joining this AllStripes research program, IBM patients are able to receive their comprehensive medical records at no cost and contribute de-identified data from their records to be used in research to further IBM treatments. She says AllStripes helps streamline the process for IBM patients to be involved in research from home and help increase the understanding of their condition:
“Together, we can make our voices heard,” she says about the AllStripes IBM program. By being part of AllStripes, Rhonda can contribute to multiple research efforts at once and continue to multiply her impact.
Natural history studies are research studies that look at a group of people with a particular disease over a period of time in order to understand how the disease develops and gain insights about symptoms, and potential treatments.
In 2015, after being misdiagnosed with polymyositis for 12 years, Rhonda received a diagnosis of inclusion body myositis, or IBM. That very day, she became involved in research: the doctor who diagnosed her asked her to participate in an ongoing natural history study, and she gladly agreed.
The doctor sent Rhonda home with a stack of papers to read about the study and two weeks later she was back at UC Irvine going through what she calls a “battery of baseline tests.” She returned every month for follow-up testing for the duration of the study, and was able to learn more about her rare condition in the process.
While Rhonda participated in this study in person, AllStripes is also able to support natural history studies in a different way by enabling researchers to learn from the de-identified records of members of the condition community.
Clinical trials are research studies that test a potential medical treatment to evaluate its safety and effectiveness. For a drug to get approved by the Food and Drug Administration (FDA), it must demonstrate success in clinical research.
Rhonda refers to involvement in clinical trials as both fascinating and complicated, from her experience. She explains that inclusion criteria to be involved in a clinical trial can be quite strict: “You have to be the exact round peg to fit in the round hole.”
Since IBM has no treatment, Rhonda was eager to get into a clinical trial and three years after her diagnosis she got the opportunity.
The trial she was in was a double-blind trial, so she did not know whether she was on the treatment or placebo. Regardless, she religiously took the trial pills three times a day and “treated it like a job.” Unfortunately, just a few weeks ago it was brought to light that the trial failed because phase 2 of the study did not meet its primary or secondary endpoints. Rhonda calls this news a gut punch, but tries to focus on the fact that failed trials still contribute to research because they help scientists learn more about what doesn’t work -- a statement which she first heard at a seminar a few years ago.
Patient registries are systems of collecting information about people with the same disease that can include patient data, patient reported information and biological samples. Data from patient registries can be used to support research.
Rhonda says there are many patient registries for IBM. As part of a number of these registries, Rhonda participates in ongoing surveys that go out to IBM patients. She thinks registries are useful in helping educate researchers and scientists about a specific disease.
While AllStripes is not a traditional registry, it can complement an existing registry. We are able to generate deep, audit-trailed insights from the community’s records that are not possible through more traditional registries
Rhonda says she is always researching new ways to be involved in IBM research. She does what she can to inform other IBM patients of research efforts they can participate in, too, and is a strong believer that it’s up to their community to continue to drive research forward.
Additionally, Rhonda has taken on a superhero role as the The Myositis Warrior, and has an advocacy group by that name on Facebook as well, to help educate and spur people in her rare community into action.
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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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