Welcome to flok Research Visit flok.org Get the flok app Visit flok.org Get the flok app Welcome to flok Research Together, we're building the world's first dataset fueled by daily metabolic care. flok Research invites flok app users to contribute their data to help fuel progress for our entire community. Through the lived experience of our members, we're working toward better care, new insights, and faster treatment development for our metabolic conditions. How to Join: Open or download the flok app On the main menu, visit Research > Manage Consent Join studies under Research > Current Studies Current Studies Download the flok app FAQ Open Studies Your participation helps us improve research tools, understand daily life with a metabolic disorder, and support better care for our community. flok Research Umbrella study open to all flok App users age 18 or older, and to those under 18 with the consent of their parent or guardian. Insights may help researchers learn more about how lifestyle and the lived experience of inherited metabolic disorders affect overall health. See Study Details Signal Sub-Study Enrollment closed 11/30/2025 A 12-week pilot for adults (18+ considered legal adults where they live) enrolled in flok Research. We're exploring how tools like the flok app and wearable devices can capture meaningful signals—like diet, sleep, symptoms, and wellbeing—in real time. See Study Details FAQ on flok Research flok Research invites flok app users to donate their data to help fuel progress for our community. What is flok Research? flok Research is our health research program that uses real-world data from flok app users to identify patterns. Our insights may help researchers learn more about how lifestyle and the lived experience of inherited metabolic disorders (IMDs) affect overall health. The goal is to better design studies, trials, treatments, and interventions to improve the health of people living with IMDs. Who can participate? All adult flok app users are welcome to join flok Research. Users under 18 may participate with consent from a legal guardian. When they turn 18, they’ll need to re-consent as adults. How do I join flok Research? You can join flok Research by consenting within the flok app. Open the flok app and tap Research > Manage Consent under the main menu. How long will flok Research last? flok Research will last for an indefinite period, meaning there is no fixed end date. If you decide to join, you can withdraw at any time. How will flok Research collect my data? If you choose to join flok Research, we’ll collect data in a few ways: Data you provide directly: Basic info like your name, gender, zip code, and date of birth Health details such as your metabolic condition, other diagnoses, medications, symptoms, physical activity, genetic and lab results Follow-up surveys with optional questions to help us track changes over time Historical data from HowMuchPhe.org or your flok app use between 11/11/2024 and the date you consent Connected devices like fitness trackers or health apps—if you choose to sync them Data from other sources: Electronic health records—with your permission, if requested in the future Environmental and pharmacy data to help understand external factors that may affect your health Location-based data to learn more about your surroundings—like air quality, access to groceries or parks, and local population data All new data sources will be reviewed and approved by flok’s Data Governance and Ethics Committee. Since flok Research is long-term, future research methods may evolve over time. What will flok Research do with my data? Your data will be stored securely, along with data from other flok Research participants. We’ll use it to build a scientific database that helps researchers discover how genes, lifestyle, and lived experience impact health and treatments for inherited metabolic disorders (IMDs). Only approved researchers—who meet specialized training and strict privacy standards—can access this data. They may include academic, industry, or community scientists worldwide. They’ll never receive your name or personal identifiers. Your data may be used for future research unless you withdraw, or legal limits apply. Will I be asked to do anything for flok Research? We may invite you to join additional studies run by flok or external research partners. These studies may have specific asks or time commitments based on the study. You can always say no and still stay in flok Research. Can I join flok Research even if I don’t use the flok app regularly? Yes, while daily use of the flok app adds more value for our growing dataset, every data point helps. You can still contribute even if you use the flok app occasionally. Future flok studies may have specific requests for your time or engagement, and you can always say no. I’m a caregiver of someone with a metabolic condition. Can I contribute to flok Research? Yes! The participation of caregivers is strongly encouraged. Your perspective and experiences will help provide context to the larger flok Research dataset. If you are a carrier of one of the flok conditions, your input is particularly valuable. What are the risks of joining flok Research? The main risk is to your privacy. While we use strong security measures and the risk of a data breach is low, it is not zero. If there’s a data breach, your information could be seen or misused. You can learn more about our data privacy approach below. There may be a small degree of burden in terms of time and some degree of discomfort when asked about lived experience, but the risks anticipated to be associated with participation in this research study are moderate. There may be other unknown risks, and we’ll notify you if anything new comes up that might affect your choice to participate. How will flok Research protect my privacy? Your privacy is very important to us. We will take great care to protect it. We take strong steps to keep your information safe: Data is stored on secure servers with access controls. We remove your name and replace it with a code before sharing data. Researchers get only what they need and must sign contracts agreeing not to try to identify you. We will notify you if there is a data breach. Are there any benefits to joining flok Research? You won’t receive direct medical care or payment. However, you may find value in: Seeing some of your own data and reports. Learning things that may be interesting or useful for your health. Sharing your data with your healthcare provider to guide care. Contributing to discoveries that could help future generations. If researchers find something important, flok may notify the community. Your identity will not be shared with the community in the context of these discoveries. Is there a cost to join flok Research? There are no costs to joining flok Research. Participants may incur costs for the usage of mobile data required to participate in the study through the App. Will I be paid to participate in flok Research? No, you will not be paid for joining flok Research. flok will not sell or trade any data gathered for flok Research for profit. Researchers will use your data to make discoveries. If any of their studies lead to new tests, drugs, or other commercial products, these inventions will be the property of the researchers who develop them. Any financial benefits to flok will be used to support research in the public interest. Will I be able to see my data? Yes, you’ll see data you enter in the flok app, and some reports based on it. You’ll also have access to flok Research community research summaries and can choose to share your data with others. Will I find out the results of flok Research studies? Yes, there will be two types of results we share: Group results: What flok and researchers learn from everyone’s data. These will be shared at on this web site (research.flok.org) and on flok.org, and in whitepapers, presentations, and peer-reviewed publications. Personal results: We may share findings about you, and you can choose whether to see them. Some may be helpful to share with your medical care team; others may just be interesting. Do I have to join flok Research if I use the flok app? No, taking part in flok Research is optional and you can change your mind at any time. Whatever you decide, now or in the future, will not affect your use of the flok app. If you decide to withdraw your participation in flok Research, you will need to tell us. What if I want to withdraw from flok Research? If you decide to withdraw from flok Research: We’ll stop collecting new data for research and you can continue using the flok app without contributing data. We’ll try to stop using past data, but some may still be needed to support research already underway. Deleting your flok app account does not withdraw you from research. You must notify us to withdraw. What does flok hope to learn through flok Research? Data collected through flok Research can lead to important discoveries, like how genetic differences shape presentation or outcomes, treatment responses, and more. Who can answer my questions about flok Research? If you have questions about flok Research: Contact flok: [email protected] For IRB questions, contact: [email protected] Submission Successful The form has been successfully submitted. Back to site © 2026 flok Research IRB-approved study | North Star IRB | Approval #: NB500298 Protocol: FLOK IRB-2025-001 | V1.1 – June 17, 2025 Sponsor: flok Health All rights reserved.