BetterLife FSHD Canada 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 Canada 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 Canada, you will be asked to share data about your FSHD and your health. 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 Canada 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 Canada, 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 Canada was created by a patient advocacy organization (the FSHD Society) and the data is managed by the Canadian Neuromuscular Disease Registry (CNDR), first and foremost to serve and give voice to the patient community, while also accelerating FSHD research. BetterLife FSHD Canada 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 Canada who is 1 year of age or older can join BetterLife Canada. 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 (under the age of 18) 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 Canada, 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 to ensure you fully understand and voluntarily agree to take part in research. BetterLife FSHD Canada 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.
You will sign an informed consent if you decide to join BetterLife and create an account.
If you are a parent signing up your child for BetterLife FSHD Canada 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 Canada. The informed consent form provides all the details about what you agree to, which includes: • The data you provide will be used to generate personal insights and recommendations in your BetterLife FSHD Canada dashboard. • The data you provide will be used to do research and shared with researchers. However, your identity is always protected. • The data you provide can be used to connect you with research or clinical trial opportunities that you may be eligible for. • You will have the option to link your BetterLife FSHD Canada data to your CNDR record (if applicable). • You may choose to share your BetterLife data with TREAT-NMD, an international neuromuscular disease registry based in France.
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.
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 Canada.
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 Canada 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.
The BetterLife Canada team is committed to protecting your personal information, such as your name and contact information. Your personal information will be used 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 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) needed for research. Your identity always remains confidential.
You will also have the option to link your BetterLife Canada data with your record at the CNDR (if you are part of the registry) or share it with TREAT-NMD, an international registry for neuromuscular diseases. Both of options are completely voluntary. You are not required to agree to either in order to join BetterLife FSHD Canada.
Researchers who wish to use health data in BetterLife FSHD Canada must submit a data request to the BetterLife team with details about their project purpose and plans. The CNDR FSHD Working Group is made up of Canadian doctors who specialize in FSHD. They will review all data requests to make sure the research aligns with the goals of BetterLife FSHD Canada 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, Health Canada, Canada’s Drug Agency (CDA) or Institut national d’excellence en santé et en services sociaux (INESSS).
There is not currently a BetterLife FSHD Canada 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 Canada from your phone’s home screen? Check out the next FAQ to learn how!
You can add a shortcut to BetterLife Canada 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 Canada: ca.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. Voilà! 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 Canada: ca.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. Voilà! You now have a direct shortcut to BetterLife from your home screen!
Currently, BetterLife Canada is not available in languages other than English and French, 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 Canada at this time. You must reside in Canada to be eligible for BetterLife FSHD Canada.
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 and Canada 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 the FSHD Society 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 Canada 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 Canada will be seen or accessed by someone who is not authorized. However, the BetterLife team 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 Canada 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 in Canada. 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.
The best way to get in touch is to email the BetterLife Canada team at [email protected]. We are always happy to hear from you!
The age of legal adulthood (also called “age of majority”) is the age at which a person is legally recognized as an adult and can make decisions on their own behalf - including singing contracts, giving consent, and managing personal information.
This legal milestone is why youth participants must re-consent themselves when they reach this age - even if a parent or guardian previously consented on their behalf.
Federal and international guidelines require a person to sign an informed consent form to participate in research studies (including a research platform like BetterLife FSHD Canada). Parents/legal guardians are allowed to sign-up their children into BetterLife, since they are considered “minors”. However, when a child reaches the age of legal adulthood (also called “age of majority”) they are now able to sign a consent form for themselves. lf your child is turning the age of legal adulthood soon, they are now able to choose if they would like to continue participating in BetterLife. In order to follow legal guidelines and ensure a smooth transition of their research information we have outlined the transition steps below.
Step 1 Confirm your child’s information (email, date of birth, and phone number) is correct in BetterLife.
This is done by accessing your child’s profile and following the on screen prompts. As a parent/legal guardian you will receive email notifications 30, 60 and 90 days prior to your child’s birthday to take this action, and you will also see a notification banner on their profile.
Step 2 Changes will occur on your child’s birthday.
The day of your child’s birthday you will no longer be able to edit information in their profile.
Step 3 Your child will receive an email 2 days following their birthday with instructions on how to either re-consent (continue participating) or withdraw from BetterLife.
In Canada, the age of legal adulthood is 18 years old.
As a parent/guardian, you will receive email notifications 90, 60, and 30 days before your child turns the legal age. These reminders will prompt you to confirm your child’s contact information so they can take control of their account. You’ll also see a banner message on your child’s profile in the portal during this time.
If the child re-consents, their data will remain and they’ll gain full control over their account.
If they choose to withdraw, their data will either be de-idenfitied or fully removed from the system - this is dependent on the type of the withdraw the individual chooses.
If no action is taken, their existing data will remain securely stored, however no one (including their parent/guardian) will be able to add or change anything on their profile except for an Administrator. The individual can still take ownership of their profile later by contacting [email protected] and completing a verification process.
Only if your child adds you as a delegate after taking control of their account. Otherwise, you will retain view-only access for up to 60 days after their birthday. After that, your access will be fully removed unless your child re-invites you.
If no email is confirmed for your child, they will not receive an invitation to take over their account. You will lose the ability to edit their profile on their birthday, and all access ends 60 days later. You’ll receive a final email when access is fully removed.
If your child does not respond to the invitation to register, their data will remain safely stored and no one can add new information to their profile. They can still take ownership later by contacting the BetterLife team and verifying their identity.
No — we must wait until your child reaches adulthood before they can sign the adult consent form and take ownership of their account. However, you can prepare for the transition in advance by confirming their contact details and talking with them about their options.