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.

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.

You can join flok Research by consenting within the flok app. Open the flok app and tap Research > Manage Consent under the main menu.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Data collected through flok Research can lead to important discoveries, like how genetic differences shape presentation or outcomes, treatment responses, and more.

If you have questions about flok Research:

• Contact flok: support@flok.org 
• For IRB questions, contact: info@northstarreviewboard.org