Frequently asked questions
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BetterLife FSHD is a health and research platform created by the FSHD Society. The platform connects patients and researchers with valuable data and information about FSHD. When you join BetterLife and share your information, you help speed FSHD research and help all people with FSHD live better lives.
BetterLife FSHD aims to achieve two goals:
#1. To help patients live a better life with FSHD.
#2. To speed and improve FSHD research and therapies.
When you join BetterLife FSHD, you will be asked to share data about your FSHD and your heath. BetterLife uses this data to suggest resources we think will be helpful to you personally, such as articles, videos, or community groups. BetterLife also matches you to clinical trials and research studies that you may be a good fit for. And you can use BetterLife to track your FSHD progression and symptoms.
The data you share in BetterLife FSHD is made available to researchers working on FSHD. However, your identity is always protected. Researchers use data from BetterLife to improve their understanding of FSHD and how it affects patients’ lives. Researchers also use the data to design better treatments and clinical trials, improve clinical care, and help make sure patients can access treatments.
As research and clinical trials advance, it is more important than ever for people with FSHD to be actively involved in research, in their own care, and in advocacy. When you join BetterLife FSHD, your voice becomes part of a powerful story. Every piece of information that you share contributes to a deeper understanding of FSHD, helping researchers develop more effective treatments. You're not just managing your FSHD, you're paving the way for a better future for everyone affected.
Most registries are created and managed by researchers at academic institutions for specific research uses. BetterLife FSHD is created and managed by a patient advocacy organization (the FSHD Society), first and foremost to serve and give voice to the patient community, while also accelerating FSHD research. BetterLife FSHD is an interactive platform that provides personalized tools and resources for people with FSHD – something most registries are not able to offer.
Anyone with FSHD living in the United States or its territories who is 1 year of age or older can join BetterLife. To be eligible, you must have a diagnosis of FSHD, or have a family history of FSHD and be experiencing symptoms. However, if you are not an adult (18 or older in most states, 19 or older in Nebraska and Alabama, and 21 or older in Puerto Rico) you must have permission from a parent or legal guardian to join. In this case, your parent or legal guardian should sign up for BetterLife with their information, then create a profile for you in their account.
When you decide to join BetterLife FSHD, you will be guided through a simple sign-up process:
1. Create an account and verify your email address
2. Complete an informed consent form
3. Create a profile for each person with FSHD, such as yourself and/or your child(ren)
An informed consent form explains what is involved in a research study, including its goals and the benefits and risks to you. It helps that ensure you fully understand and voluntarily agree to take part in research. BetterLife FSHD is a research project, and all people eligible to join will be asked to review and voluntarily sign the informed consent form to take part.
If you are a parent signing up your child for BetterLife FSHD and they are old enough to understand, you should talk to your child about including their information in BetterLife and make sure they agree to take part.
When you sign the informed consent form, you agree to join BetterLife FSHD. The informed consent form provides all the details about what you agree to, which includes:
• You will be added to the FSHD Society’s contact database and will receive educational and marketing communications from the FSHD Society. You can opt out of these communications at any time.
• The data you provide will be used to generate personal insights and recommendations in your BetterLife FSHD dashboard.
• The data you provide will be used to do research and shared with researchers. However, your identity is always protected.
After you complete the sign-up process, you will be asked to fill out surveys with demographic data and data about your FSHD diagnosis and symptoms. It should take about 1 hour to sign-up and complete these steps, but you do not have to do it all at one time.
Over time, we will ask for more data about your journey with FSHD. For example, we may ask you to respond to surveys about your pain, fatigue, or exercise. These surveys are optional, and you can respond whenever they are available in your profile. You will also have the option to connect your electronic medical records through your health provider, and the option to upload your genetic test results.
If you no longer want to take part, you can withdraw your consent from your profile management page or contact the BetterLife team. You can choose to allow BetterLife to continue to use the data you already provided or to have your data deleted. However, data that was used and shared before you asked for it to be deleted cannot be retracted.
No, there are no costs to join or take part in BetterLife FSHD.
If you haven't received an official diagnosis of FSHD you may still join BetterLife if...
- You have a family history of FSHD and believe that you are experiencing symptoms related to FSHD.
We ask you to refrain from joining BetterLife until you receive a clinical diagnosis or genetic confirmation if...
- You think you are experiencing symptoms, but you do not have a family history of FSHD.
- You have a family history of FSHD, but you are not experiencing any symptoms of FSHD.
BetterLife FSHD collects personal information, such as your name and contact information, as well as health information. Your health information is collected through surveys and other activities within BetterLife, such as connecting your electronic health records or uploading a copy of your genetic testing results.
The FSHD Society is committed to protecting your personal information, such as your name and contact information. Your personal information will go into the FSHD Society’s contact database for marketing communications, which you can choose to opt out of. We will never give your personal information to anyone else without your permission.
The BetterLife team uses your health data to do research and shares your health data with qualified researchers. Before your health data is used, your name and any personal information that could identify you is removed, such as your name and contact information. Then, your health data is assigned a unique ID number. Only select BetterLife team members can link your personal information with your ID number. Researchers only receive your ID number, and they must agree not to try to figure out who you are. After your personal information is removed, your health data may also be linked with other data sources (for example, other FSHD studies or insurance claims databases) needed for research. Your identity always remains confidential.
Researchers who wish to use health data in BetterLife FSHD must submit a data request to the BetterLife team with details about their project purpose and plans. A steering committee reviews all data requests to make sure the research aligns with the goals of BetterLife FSHD and the requestor is trustworthy. Once the request is approved, researchers work with the BetterLife team to securely obtain the health data needed for their study.
People who might access your health data include researchers from pharmaceutical or biotechnology companies, academic institutions, hospitals, or other organizations involved in research and therapeutic development. Your health data may also be shared with government agencies or payor systems who make decisions about treatment approvals and access, for example, the Food and Drug Administration (FDA) or the Institute for Clinical and Economic Review (ICER).
There is not currently a BetterLife FSHD mobile app. However, the web-based interface is optimized to work correctly in a browser on your mobile device.
Did you know that you can create a shortcut to BetterLife FSHD from your phone’s home screen? Check out the next FAQ to learn how!
You can add a shortcut to BetterLife to your phone’s home screen, allowing you to launch BetterLife in a similar way to how you launch apps.
Using iPhone:
1. Open your browser (for example, Safari) and navigate to BetterLife FSHD: www.BetterLifeFSHD.org
2. Near the address bar, you should see an icon of a square with an arrow pointing upward. Tap that icon.
3. Scroll down the menu that just popped up until you see “Add to Home Screen.” Tap that option.
4. You’ll have to option to edit the name of your shortcut. When you’re happy with the name, tap “Add.”
5. Voila! You now have a direct shortcut to BetterLife from your home screen!
Using Android:
1. Open your browser (for example, Chrome) and navigate to BetterLife FSHD: www.BetterLifeFSHD.org
2. Look for an icon with three dots. Tap that icon.
3. Scroll down the menu that just popped up until you see “Add to Home Screen.” Tap that option.
4. You’ll have to option to edit the name of your shortcut. When you’re happy with the name, tap “Add.”
5. Voila! You now have a direct shortcut to BetterLife from your home screen!
Currently, BetterLife is not available in languages other than English and we do not have translation support. However, if this would be helpful to you, please let us know by emailing us at [email protected].
No, unfortunately, you cannot join BetterLife at this time. You must reside in the United States to be eligible for BetterLife.
BetterLife is a research platform that must comply with research laws and legal data regulations. These legal regulations are complex and different in every country. BetterLife is currently set up to comply with all US research laws and data regulations, though we are investigating regulations in other countries as well.
To collect the best research data in BetterLife, we must also consider the many languages spoken all over the world and the quality of any language translations. Together, these are complicated topics that require deep consideration and expertise.
The FSHD Society is dedicated to working collaboratively with patient groups and researchers all over the world. In some countries, that may mean tackling local regulations and language translations to make BetterLife available. In other countries, that may mean supporting a different resource that makes more sense for the FSHD community there. In either case, we are committed to helping people with FSHD live their best lives.
We encourage you to connect with the FSHD / muscular dystrophy patient organization in your country for resources and support. Links to many of these organizations can be found on our webpage: https://www.fshdsociety.org/connect/worldfshdalliance/. If your country does not have a website/contact listed, you can reach out to [email protected]. Additionally, there are other online communities (including Facebook and Discord), which are open to people all over the world. You can learn more here: https://www.fshdsociety.org/gathering-place/.
Yes, your answers will be saved as you complete each survey screen. You can exit the survey and return at any time to complete the remaining questions. When you return to the survey, you will be sent to the screen where you stopped. Please take all the time you need to complete each survey.
Some questions have tool tips or images to help with understanding. Look for a small circle with an “i” in it and click on the “i”.
You can also chat with the BetterLife team from the Inbox in your BetterLife profile or email us at [email protected]. We will be happy to help you through any confusing questions!
Yes, you can give others permission to manage your profile from your Profile page using the “Add New Delegate” button. Delegates can view your Dashboard, respond to surveys, and fill out information on your behalf. You may want to add a spouse or partner, child, caregiver, or other loved one as a delegate. If you manage more than one patient profile in BetterLife, you can have different delegates for each profile.
There is a small risk that the data you share in BetterLife FSHD will be seen or accessed by someone who is not authorized. However, the FSHD Society is deeply committed to protecting your data and has taken all the necessary steps to reduce this risk. To create BetterLife, the FSHD Society partnered with Lumiio, a trusted provider of world-class data technology and services that empower research, healthcare, and patient advocacy. BetterLife FSHD is hosted on a secure data platform operated by Lumiio that complies with important research and privacy regulations for protecting participant data in research.
We are deeply committed to protecting your data and have taken all necessary steps to secure your information. To create BetterLife, the FSHD Society partnered with Lumiio, a trusted provider of world-class data technology and services that empower research, healthcare, and patient advocacy. BetterLife FSHD is hosted on a secure data platform operated by Lumiio that complies with important research and privacy regulations for protecting participant data in research.
Yes, data is stored on remote servers that are hosted by a cloud service provider. All of the databases used are encrypted, which is a fundamental security technique that converts data into a coded form, protecting it from unauthorized access or interception.
Yes, data is encrypted during transit and at rest. All data transmitted between users and our servers is encrypted using the HTTPS protocol, establishing a secure communication channel. This protocol relies on advanced encryption algorithms including widely recognized Advanced Encryption Standards (AES), to safeguard data during transit. Encryption keys are securely managed, and access is restricted to authorized personnel.
Buckets are used to store data and can be classified as either public or private based on their access permissions. Private buckets restrict access to its contents, while public buckets allow the public access to its content. The Lumiio platform used to run BetterLife maintains public buckets for public content such as favicons and logos, while all other data is kept in private bucks, including identifying information. By default, data is set to be in private buckets, and is initially assessed whether it meets the criteria to be stored in a public environment.
Lumiio’s test environments do not use any data from the live production databases.
To prevent data loss and ensure data accuracy, backups are taken on a regular basis. The backup procedure applies to both server fields (portal and database) as well as to the actual data stored within the database (health and patient identifying data). All backups are stored on remote servers that are hosted by a third-party provider. The backup schedule is dependent on the type of data stored.
Yes! We are always looking for passionate people to help spread the word about BetterLife as an Ambassador, to provide strategic guidance through a committee or advisory group, and to generally share your feedback, opinions, and ideas. Please get in touch with our team to learn about how you can be more involved at [email protected].
The best way to get in touch is to email the BetterLife team at [email protected]. We are always happy to hear from you!