Get ready for a meaningful step forward in our drive to discover effective treatments for Nemaline Myopathy! A Foundation Building Strength (AFBS) is honored to be selected for the Chan Zuckerberg Initiative’s prestigious Digital Natural History Accelerator Program, powered by Citizen Health. This incredible opportunity marks an important milestone, one that can revolutionize how we collect, understand and use NM data to advance research and care. A key component of this effort is collaborating with Citizen Health on a powerful NM research data platform. We couldn’t be more excited about the potential it holds!
What This Groundbreaking Partnership Means for Our Community
For years, AFBS has been deeply committed to driving Nemaline Myopathy research. This powerful new partnership, made possible by the honor of being chosen for CZI’s Digital Natural History Accelerator Program, will supercharge our efforts by establishing a comprehensive retrospective digital natural history study. At its heart, this initiative places individuals living with NM and their dedicated caregivers at the very center of research.
Imagine being able to:
- Effortlessly have all your or your loved one’s medical records securely collected and organized in one convenient, digital hub.
- Access your complete medical history anytime, anywhere you need it.
- Contribute your de-identified data (with your full consent) to fuel critical research, including our groundbreaking digital natural history study.
Introducing “100 Starts with One”: Your Data, Our Strength
To propel this near-readiness into real research breakthroughs, we’re launching our “100 Starts with One” campaign – a focused 100-day initiative with a powerful message: every single individual’s contribution matters. Our initial goal is to empower 100 families to join the Citizen Health platform within the next 100 days.
Why 100 Families? This number is a critical first step. By bringing together the de-identified medical data of at least 100 families affected by Nemaline Myopathy, we will provide researchers with a sufficiently robust dataset to begin identifying meaningful patterns in how NM manifests and progresses across our community. This critical mass of information will lay the essential foundation for future research endeavors and accelerate the discovery of potential treatment targets.
How do I participate? All you need to do is Sign up for a Citizen Health account – it’s quick and easy, taking just about five minutes. (Check out the video below that walks you through the entire process!) During signup, you’ll share the names of the doctors or healthcare facilities where you’ve received care. If your providers are part of a larger system with centralized records, you only need to name the facility or group! Once you’ve provided this information, Citizen Health takes the lead in securely gathering your medical records. Finally, you’ll grant your consent to share your de-identified health data with researchers and AFBS. That’s it!
Why This Program is a Powerful Catalyst for Discovery
While AFBS is also committed to launching a prospective natural history study this year – a crucial undertaking that will yield invaluable data over time – this exciting CZI-sponsored initiative offers a unique and rapid pathway to understanding NM. By retrospectively mining information and patterns from years of existing medical records, this digital approach can yield significant insights much more quickly. It allows us to efficiently gather comprehensive, longitudinal data from across our community:
- Accelerated Research Insights: Your de-identified data will power our digital natural history study, providing researchers with invaluable insights into the progression of NM over time. This deep understanding, gained rapidly from existing records, is crucial for identifying potential treatment targets and designing more effective clinical trials.
- Effortless Contribution: Families can contribute to vital research without the need for additional appointments or travel beyond the initial sign-up.
- Your Medical Information Working Harder for You: Beyond its research value, this platform offers a significant personal benefit: easy access to your complete medical history in one secure place. Imagine being able to use a cutting-edge AI query to ask questions about your medical journey and quickly gather the information you need for future medical appointments. This puts you in greater control of your healthcare information.
- A Tremendous Opportunity: Being hand-picked by the Chan Zuckerberg Initiative for this prestigious Digital Natural History Accelerator Program means our community will benefit from a comprehensive dataset derived from existing records at no cost – a resource that typically demands significant funding and resources to develop. This is a testament to the urgency and importance of finding solutions for NM.
A Personal Note from Jen Tozer, Executive Director, A Foundation Building Strength:
Dear NM Community,
We’re thrilled to be kicking off our groundbreaking partnership with Citizen Health, a big step forward in our mission to find treatments for Nemaline Myopathy. This project brings two exciting benefits: it unlocks the potential to accelerate research by analyzing years of real-world medical data, and it provides each participant with a secure, accessible health record platform.
By signing up, you’re not only gaining a valuable resource for your own care, you’re helping drive critical discoveries that could benefit the entire NM community. Every participant adds a vital piece to the research puzzle. I’m inspired and hopeful by the momentum we’re building, and I invite you to be part of it. Please sign up today and help share the future of NM research.
Jen Tozer – Executive Director, AFBS
Join Us Today – Your Contribution Matters!
Together, we have the power to transform the landscape of Nemaline Myopathy research and build a brighter future for our community. Take the first step with “100 Starts with One.”
Frequently Asked Questions
Creating your secure Citizen Health account takes approximately 5 minutes. After that, Citizen Health will handle the work of securely collecting and organizing your medical records.
Absolutely. Citizen Health employs HIPAA-compliant, state-of-the-art security measures to ensure the protection of all patient information. Your data is only used for research purposes with your explicit consent and is always shared in a de-identified format, meaning your personal identifiers are removed.
While Citizen Health can currently only facilitate the direct collection of medical records for patients within the US healthcare system, international patients are still encouraged to join the platform. They can upload their genetic reports and other relevant health data to contribute to future research datasets and utilize Citizen Health as a secure personal health record.
By building a comprehensive retrospective digital natural history study with data contributed by our community – starting with our initial goal of 100 families to identify key patterns by analyzing years of existing medical information – researchers will gain an unprecedented understanding of how NM affects individuals over time. This deep insight is crucial for identifying potential targets for treatment development, understanding disease progression, and designing more effective and patient-centric clinical trials. This approach offers the potential for more rapid insights compared to studies that collect data prospectively over many years.
Citizen Health is developing cutting-edge AI tools that will allow users to ask questions about their aggregated and anonymized medical history within their own private account. This feature aims to help individuals quickly find patterns and information within their medical records for personal use and to better prepare for medical appointments.