Popular Searches
New Digital Health Tool Trial
This clinical trial is testing a new smartphone app and wearable devices designed to help people with rare diseases track their symptoms and quality of life daily in an easy and supportive way.
Clinical trials are key to medical advancement, providing opportunities to test new tools and treatments to improve patient care. The CZI Rare As One trial (NCT06907953) is exploring innovative ways to help people with rare diseases track and manage their symptoms using apps and wearables, aiming to support better health outcomes.
Understanding new research is a top priority for patients and caregivers seeking information on treatment options, managing side effects, and exploring potential avenues for improvement. This post aims to provide a clear overview of what this trial is about and how it could potentially impact the future of Rare Diseases including Long COVID, Pancreatitis, Sarcoidosis, VCP disease, Primary Ciliary Disease care.
Rare diseases like Long COVID, chronic pancreatitis, sarcoidosis, VCP disease, and primary ciliary disease affect small groups of people with various symptoms such as fatigue, breathing difficulties, and pain. Because these conditions often have complex symptoms, new tools that help people monitor their health daily are important. The Rare Disease App Study aims to develop such tools to help people and their doctors better understand and manage these diseases.
trialstoday.org: This study is funded by the Chan Zuckerberg Initiative and works directly with patients and caregivers to design and test a digital app and wearable device system. The focus is on tracking symptoms for rare diseases, including Long COVID, Pancreatitis, Sarcoidosis, VCP disease, and Primary Ciliary Disease. Patients use these digital tools to keep daily records of their symptoms, which helps both them and researchers see how their illness changes over time. This co-designed approach allows people to actively and passively monitor their health in real-time. [1].
arxiv.org: This study tests a new way to measure how severe Long COVID and Chronic Fatigue Syndrome are using a wearable sensor placed on the ankle. Participants wore the device for a week, and researchers tracked their "UpTime," a number showing how active they are during the day. Results showed that this method could clearly separate healthy people from those with these rare diseases, making it a useful way to measure symptoms objectively. [2].
Rare Diseases including Long COVID, Pancreatitis, Sarcoidosis, VCP disease, Primary Ciliary Disease can manifest in various ways, but some of the most common symptoms include:
These symptoms can make daily activities hard and reduce quality of life. Tracking them with new technologies can provide helpful information for patients and health providers.
The Rare Disease App Study is testing a smartphone app combined with wearable gadgets to help people with rare diseases record and send information about their symptoms easily every day.
Apps are programs you use on your phone, designed here to let you report how you're feeling and track symptoms over time. Wearable devices like smart rings, wristbands, and watches can collect health data like heart rate and sleep patterns without needing you to do anything extra. Together, they help keep a clear picture of health.
This study aims to check how well these new tools work for patients, including how easy they are to use and if people stick with using them over several months.
Wearable devices collect health signals like heart rate, sleep quality, and breathing patterns passively, while the app lets patients actively report symptoms and daily routines through simple tasks and surveys. This combination offers a fuller picture of health and disease impact.
This study combines patient co-designed technology with wearables to improve symptom tracking in rare diseases, aiming for tools that are easy to use and provide valuable health information without adding burden on patients.
This is an observational, prospective cohort study where participants use the app and wearables over time to provide feedback and real-life data to test usability, adherence, and benefits.
The Rare Disease App Study (NCT06907953) embodies this important research by:
Clinical trials have specific criteria to ensure the safety of participants and the validity of the study results. For the Rare Disease App Study trial, key eligibility criteria include:
If you join the Rare Disease App Study, here is what you can expect:
The duration of your participation will vary depending on the study design, but the research team will explain the full commitment before enrollment.
Like all medical interventions, participation in a clinical trial carries both potential benefits and risks.
A detailed explanation of all potential risks and benefits will be provided during the informed consent process.
The Rare Disease App Study (NCT06907953) is currently recruiting participants in New York, United States, and is open at various sites across the US.
If you are interested in potentially participating, it is crucial to discuss these criteria with your healthcare provider. They can determine if you meet the specific requirements. You may share this link with your provider’s email address, or have them visit ClinQuestAi.com and type in NCT06907953.
You can also:
Remember: Deciding to participate in a clinical trial is a personal choice. It’s important to discuss all aspects of the trial with your healthcare provider to ensure it’s the right decision for your individual health situation.
All health-related content on this website, whether drafted by our team or with AI assistance, undergoes a rigorous human review process before publication. Every article is fact-checked, edited, and medically reviewed by a licensed medical professional with relevant expertise. Our goal is to provide information that is accurate, aligned with current medical consensus, empathetic, and useful for patients and caregivers. We are committed to transparency, clearly citing sources and displaying author and reviewer credentials to uphold the highest standards of E-E-A-T (Experience, Expertise, Authoritativeness, and Trustworthiness).