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Frequently asked questions

About GenV

What is GenV?

What is GenV?

GenV is the largest childhood research project ever in Australia.  It is painting a picture of how children grow and develop, how people age, and how health changes across generations. It creates the building blocks to help researchers, communities and policy makers to improve health and wellbeing together. We hope it leads to better and safer care, and answers some of the most important questions facing our children and parents. By the end of 2023, we will have invited around 170,000 babies and their parents across Victoria into GenV.

Why GenV?

Why GenV?

GenV is a state-wide research program. For the first time, it will give a complete picture of the health and wellbeing of a whole generation.

All babies born in Victoria during 2021 to 2023, and their parents, are invited to take part. We want to include children and parents from all walks of life. Every family matters – including yours.

GenV combines information you provide with data already collected by other services. This means it takes very little of your time. Future research can then find answers to complex health and wellbeing questions faster than we can today.

We hope GenV will help to prevent, predict and treat the issues facing children and parents today. We want to see less problems like preterm birth, allergies, mental illness for everyone.

By being part of GenV, you can help create a better future for all families – now and tomorrow.

What does GenV involve?

What does GenV involve?

When you decide to join GenV, you give us permission to access and join information about your physical and mental health, education, and social data from other places to build a more complete picture of children and their families.

We also collect some basic contact details from you when you join GenV, so that we can contact you in the future. The way we look after your information is based on best-practice worldwide. We store all information in secure environments and perform regular security testing.

This means that GenV takes very little effort from you, but creates meaningful change for families. We hope to study family health and wellbeing over many years.

You can read more about what GenV involves for you and your child in the Parent/Guardian Information Statement.

Who is conducting GenV?

Who is conducting GenV?

GenV is the work of many. It is led from the Melbourne Children’s Campus (Murdoch Children’s Research Institute, The Royal Children’s Hospital, and University of Melbourne, supported by the Royal Children’s Hospital Foundation).

It is supported by:

  • birthing and local children’s hospitals around Victoria
  • Victorian universities and research institutes
  • leading experts in Victoria, Australia and around the world
  • local families and communities, who have helped to design GenV.

The Scientific Director is Professor Melissa Wake, a paediatrician – that is, a children’s doctor. You can read about her and the rest of the team here.

The GenV team members who will invite you to join GenV come from a variety of backgrounds. They typically have experience in research and/or maternity and other health care settings. All are trained in research, privacy and confidentiality to ensure all participant information is handled respectfully and securely.

Who is funding GenV?

Who is funding GenV?

GenV is funded by the Paul Ramsay Foundation, the Royal Children’s Hospital Foundation and the Victorian Government. You can read more about our supporters and partners here.

Joining GenV

How do I join GenV?

How do I join GenV?

A member of the GenV team visits or contacts you soon after your baby is born – usually in the hospital. The visit takes around 15-20 minutes. We explain the project, and ask if you are willing to take part with your baby. If possible, we also invite your baby’s other parent. To take part in GenV, you’ll need to need to sign a consent form.

All babies born in Victoria during 2021 to 2023, and their parents, will be invited to take part. If we miss you in hospital, you can contact us here to let us know you want to take part.

What are the benefits of joining GenV?

What are the benefits of joining GenV?

GenV may or may not directly benefit you or your child.

We can give on-the-spot feedback when you or your child complete surveys or assessments. You may find this helpful. You can read more about feedback from GenV in the Parent/Guardian Information Statement.

Over time, GenV is hoping to report on many issues relevant to children and parents in general. We hope that GenV will help improve the lives of many children and parents. We plan to share these overall results with you, and hope they are useful to you.

Are there risks for joining GenV?

Are there risks for joining GenV?

Joining GenV should not cause any harm or affect the care that you or your child receive. Like all data systems, there is a small risk of data privacy being breached. GenV is committed to ensuring personal information remains secure and private. We store all information in secure environments and perform regular security testing.

You can read more about how GenV protects your privacy in the Parent/Guardian Information Statement.

We understand that joining GenV takes trust. Trust by parents like you has led to many discoveries that help children and adults today, in areas like infection and cancer. We will work hard to repay your trust.

Do we have to take part?

Do we have to take part?

No. It’s up to you. Whatever you decide, it will not affect the care you or your child receive. However, the more people that take part, the more valuable GenV becomes.

Can I change my mind?

Can I change my mind?

Yes, you can change your mind at any time. Just contact us here.

How will you know I’ve had a baby?

How will you know I’ve had a baby?

GenV team members will be at maternity service across Victoria. Each day they will find out about new births so they know who to invite to join GenV.

GenV finds out about new births from the Victorian Infant Hearing Screening Program (VIHSP). VIHSP is a state-wide service provided by the Royal Children’s Hospital. GenV only receives enough information from VIHSP to identify and locate you and your baby in the hospital. We won’t have access to any other health information about you or your baby from VIHSP. You can read more about the information we receive from VIHSP here.

What kinds of information will GenV access?

What kinds of information will GenV access?

Some examples of information GenV will access with your permission are:

  • Physical and mental health: eg Medicare, hospital records, copies of digital scans like ultrasounds, information collected about your pregnancy
  • Education: eg NAPLAN (national literacy and numeracy assessments at school, if your child takes part)
  • Social: eg National Disability Insurance Scheme, child care support/welfare
  • Information about the neighbourhoods where you spend your time: eg childcare service locations from the government and air pollution from the environmental protection agency.

Each year, we will list the data sources GenV accesses on this website. This means you always know what we are accessing, and can contact us if you have any questions or concerns.

What kinds of routine samples will GenV access?

What kinds of routine samples will GenV access?

Some examples of routine samples GenV will access with your permission are:

  • The screening blood test you may have had at around 10-12 weeks of pregnancy – testing your baby for certain conditions
  • The blood sample from your baby’s newborn screening card (heel prick) – checking for rare conditions that can be treated. If you were born in Australia, we would also like to access your own card if one exists.
  • Other routine samples you may have given during pregnancy, and samples you or your child may give going forward.

You can find out more about these samples in the Parent/Guardian Information Statement

Each year, we will list the samples GenV accesses on this website. This means you always know what we are accessing, and can contact us if you have any questions or concerns.

How often will I be contacted?

How often will I be contacted?

Once you join GenV we will contact you about four times a year. GenV may ask for updates on how you and your child are going – like short surveys and health and development assessments. These take between 3 and 20 minutes – we know how valuable your time is. You decide each time whether to complete them. You can complete them at a time that suits you.

GenV Data and Privacy

How will GenV look after my information?

How will GenV look after my information?

GenV is committed to ensuring personal information remains secure and private. We store all information in secure environments and perform regular security testing.

You can read more about how GenV looks after your information here and in the Parent/Guardian Information Statement.

You can also read MCRI’s Privacy Policy.

How will GenV’s research data be used?

How will GenV’s research data be used?

GenV combines information you provide with data already collected by other services. We store all information in secure environments and perform regular security testing.

Researchers can to apply to use GenV’s data. GenV only shares data with those working to improve the health, wellbeing and other outcomes of children and adults. Results can help to improve how we predict, prevent and treat problems. They will also help policy makers make good decisions to support Victorian families.

You can read more about how your data is used in the Parent/Guardian Information Statement

How does GenV use my personal information?

How does GenV use my personal information?

GenV is committed to ensuring personal information remains secure and private. When you decide to join GenV, you give us permission to access and join information about your physical and mental health, education, and social data from other places to build a more complete picture of children and their families.

We also collect some basic contact details from you when you join GenV, so that we can contact you in the future. The way we look after your information is based on best-practice worldwide. We store all information in secure environments and perform regular security testing.

We use your personal information to run GenV. This is how we stay in touch with you, send you updates and invitations. We also use personal information when we access other datasets, to be sure we are matching to the right person. You have the right to access and correct the personal information we collect and store about you and your child under privacy laws. You can do this by contacting GenV.

You can read more about how GenV uses your personal information in the Parent/Guardian Information Statement.

You can also read MCRI’s Privacy Policy.

How do I find out the results of GenV?

How do I find out the results of GenV?

We encourage GenV researchers to report findings widely – this is how new knowledge gets put into practice. GenV will put summaries on its website. We hope this is helpful for parents. Only group results are published – never individual results.

More questions? Any concerns?

More questions? Any concerns?

If you have more questions or any concerns, you can contact a member of GenV here.

You can also speak to someone independent of the project about any concerns or complaints, how it’s conducted, or your or your child’s rights as a participant. Please contact the Director of Research Development & Ethics at The Royal Children’s Hospital Melbourne on (03) 9345 5044 or rch.ethics@rch.org.au.

If you have any concerns about the handling of your health information, you can contact the Health Complaints Commissioner on 1300 582 113.

GenV and Me

What is GenV?

What is GenV?

Generation Victoria is the largest child and parent research project ever in Australia. We also call it ‘GenV’. 

All families with a baby born in Victoria between October 2021 and September 2023 are invited to join.  

GenV will give a more complete picture of child and parent health and wellbeing. It’s a world first.  

GenV combines information each family provides with data from other services. This means it takes very little of your time. Future research can then find answers to complex questions faster than we can today. 

We hope GenV will help to prevent, predict and treat the issues facing children and parents today. We want to see less problems like asthma, allergies, and mental illness for everyone. 

By being part of GenV, you can help create a better future for all families – now and tomorrow. 

What is GenV and Me?

What is GenV and Me?

Once you join GenV, we contact you about four times a year. Each ‘GenV and Me’ survey has short questions and health and development activities. This is how parents add to GenV as their child grows.  

GenV and Me is the App to do this. You complete short ‘GenV and Me’ surveys and tasks on-line. Or, you download the App onto your device (phone, tablet).  

All up, the GenV and Me survey takes a few minutes each time. We know how valuable your time is. You can choose to do all, some or none of the surveys. However, we hope you can do them all. The more complete your survey, the more valuable your information.  

GenV lets you know when a new survey is available. We send an email, text message or push notification. You don’t need to do anything until then.  

What is GenV and Me about? What kind of topics does it cover?

What is GenV and Me about? What kind of topics does it cover?

GenV and Me surveys ask about your and your child’s health and well being and your child’s development. Examples include health conditions, what your child can do now, how you feel as a parent, and about your family life and household. Some topics stay the same. Others change each time  

It always has some survey questions. Sometimes it includes photos, recordings or interactive activities like puzzles. We try to make it easy, quick and interesting for you to stay in GenV.  

The GenV and Me App is also how we stay in touch with you. It can ask about your health. We won’t provide specific health advice to you and your family but where we can we will provide general health information and guidance that we hope is useful. However, the App can’t give medical advice. 

When will GenV ask me to complete surveys and activities?

When will GenV ask me to complete surveys and activities?

About four times per year, GenV sends you a short survey to update us on how you and your child are going. Each one takes about 10 minutes to do.   

Usually, they arrive around your child’s birthday and then 3, 6 and 9 months later. 

If you joined GenV very early, your first surveys will arrive later. This is because GenV and Me wasn’t ready – we are sorry about this. We hope you will pick up the survey at a slightly older age.   

How much time will it take me?

How much time will it take me?

All up, the GenV and Me survey usually takes around 10 minutes each time – and no more than 20 minutes. We know how valuable your time is. You can choose to do all, some or none of the activities. You can do them all at once, or start now and come back later. 

However, we hope you can do them all. The more complete your survey, the more valuable your information. 

How long do I have to complete my surveys?

How long do I have to complete my surveys?

The earlier the better. We hope you can do your survey in the week or so after it arrives. This is one reason we keep it short. If almost all parents answer at the same child age, GenV has a better picture of how health and development differ.   

But we also know parents are busy, and you may not be able to answer at once. The survey links stay open for about 3 months. When it’s about to expire, GenV and Me’s main screen will tell you. We value your survey at any time. 

We’ll also send you a reminders, to give you every chance to get your answers to us. 

What if I don’t know how to answer a question?

What if I don’t know how to answer a question?

Just answer as best you can. There are no wrong answers when it comes to you and your child. 

Some questions have a ‘more information’ button – look for the letter ‘i’ – this shows more information or examples.  

You can also skip any question if you need to. 

Do I have to do everything?

Do I have to do everything?

You can choose to do all, some or none of the survey. However, we hope you can do them all. We keep the GenV surveys very short. 

The more complete your survey, the more valuable your information.  Each piece helps paint a better picture of how children grow and develop, how people age, and how health changes across generations.  We hope GenV will lead to better lives for children and parents like you. 

Can I change my answers after I’ve finished a survey?

Can I change my answers after I’ve finished a survey?

You can change your answers while the survey is open.   

You can’t change them once it’s submitted. 

But don’t worry. There is no right or wrong answer. Also, we come back to most topics again. You’ll have another chance then to give your best answer.  

Learn more about how you can contact us to correct any personal information we hold about you here (hyperlink https://genv.org.au/privacy/). 

Can I start now and come back later?

Can I start now and come back later?

Yes.  If you need to step away, you can come back later. Click on the same link using the same phone or device – it will take you to where you left off. 

My partner and I share an email address or phone number. Why does GenV only send one survey to this address or number?

My partner and I share an email address or phone number. Why does GenV only send one survey to this address or number?

When you joined GenV, you and your partner gave us permission to contact you via email and/or phone.  

If you’ve only received one GenV and Me survey link, you may have both given us the same email address or mobile number.  

We encourage each GenV parent to use a separate email and phone number. Just contact us to add these details to your GenV profile (email genv@mcri.edu.au or call 1800 GEN VVV during business hours). Then we can send a survey to each of you in the future.  

Why are my partner and I asked different questions?

Why are my partner and I asked different questions?

Every participant in the GenV program is unique.   

You are part of GenV as a person, as well as a parent. Only you can tell us about your own health, your experiences, your views and your relationship with your child. We ask many of the same questions to all GenV parents. 

However, the surveys can differ in some ways: 

  • Your answer to a survey can alter the next survey. For example, we might ask some extra questions about a specific health condition.   
  • Some questions only apply to some people.  For example, we might ask some extra questions of people who speak two languages.     
  • When you joined GenV, one parent agreed to answer more questions about your child. If you and your partner want to change who gets this slightly longer survey, contact GenV (email genv@mcri.edu.au or call 1800 GEN VVV during business hours).
I prefer to read or write in a language other than English. How do I complete my surveys and tasks in a different language?

I prefer to read or write in a language other than English. How do I complete my surveys and tasks in a different language?

GenV and Me is very new.  Now, it is only in English.  Soon, it will be in other languages too.  Please stay with us!

How does GenV protect my data?

How does GenV protect my data?

Our data systems are purpose-built for GenV. It is very hard for unauthorised people to access GenV’s systems. It is also against the law. We store all information in secure environments and perform regular security testing. We also protect privacy by removing identifying details (like names) from the data that researchers use.    

To see GenV’s Privacy Information and MCRI’s Privacy Policy visit www.genv.org.au/privacy. You have the right to access and correct the personal information we store about you and your child under privacy laws. You can do this by contacting GenV at genv@mcri.edu.au or call 1800 436 888 (1800 Gen VVV) during business hours. 

GenV and Me (Troubleshooting)

How do I get the GenV and Me app on my phone or device? How do I get to the GenV and Me website?

How do I get the GenV and Me app on my phone or device? How do I get to the GenV and Me website?

You can do GenV and Me surveys in two ways: 

  • Online in your internet browser 
  • Via the GenV and Me App – in the Apple Store or and Google Play.  

How it works: 

We send you a message when your first GenV and Me survey is ready. You click on the link in the email or SMS text. You will be directed to GenV and Me ‘pick a platform’ page that asks you to choose between the website version or downloading the App.  

If you click on the website option, you will be taken to the GenV and Me website (genvandme-app.weguide.com.au). You can start without downloading anything.  

If you click on the mobile app option, you will be taken to the Apple App store or Google Play store. (Or you can go to the store, search ‘GenV and Me’, and download it.)

How do I log in for the first time on a device? Why don't I have a username and password?

How do I log in for the first time on a device? Why don't I have a username and password?

We use a magic link instead of a username and password. It is safer, quicker and easier.  

The first time you use GenV and Me on a device (phone, tablet, laptop), there is a quick process to authenticate your device. This is how we know it belongs to the person we invited into GenV. Using the device, follow these three steps: 

  1. Open the message from GenV letting you know or reminding you there is a survey ready for you to complete. Click on the link in this message, which will take you to the GenV and Me App or website.  
  2. On the login screen, click the ‘login’ button and enter either your email or mobile number that you gave GenV to contact you 
  3. We will send you a second message to this email or mobile number. Open the message and click on the link. It will take you into the GenV and Me App (if installed) or website.  

The next time you use that device, you can click on the new survey message and go straight into the App or website. Easy! 

If you change your device, you will go through the two step authentication process to authenticate your new device (going through the same 3 steps as above).

Something went wrong? Try these tips: 

  • The login screen won’t accept my mobile number – don’t enter the ‘0’ at the start. For example, if your mobile number is 0400 111 222, enter ‘400 111 222 
  • The login screen won’t accept my email or mobile number – use the latest email or mobile number you gave GenV. Could you have given us a different number or email? 
  • The link in the second message expires after 1 hour. If it has expired, start the process again 
  • Didn’t get the second message? It can take a few minutes to arrive. Check your junk and spam folders 
  • Make sure you use the same device for the whole process. It won’t work if for example, you click the first message on your laptop and then the second message on your phone. If you want to use a laptop to complete your GenV and Me surveys, it will be easier if at the second step, you enter your email than your mobile number.  
  • Still not in? Contact GenV at genv@mcri.edu.au or call 1800 436 888 (1800 Gen VVV) during business hours 
My GenV and Me App/browser isn’t working. How I can get help?

My GenV and Me App/browser isn’t working. How I can get help?

If you’re using the App: make sure you have the latest version update it in the Apple App Store or Google Play Store. Don’t forget, you can always use the website version of GenV and me – go to genvandme-app.weguide.com.au 

Currently, GenV and Me is supported on these browsers and operating systems: 

  1. Chrome 70+ 
  2. Safari 12.0.2+ 
  3. Firefox 64+ 
  4. Edge 81+ 
  5. Opera 58+ 
  6. iOS 12.1.0+ (app) 
  7. iOS 12.1.0+ (Chrome) 
  8. iOS 12.1.0+ (Safari) 
  9. macOS 10.14: Mojave (Safari) 
  10. Android 9.0+ (app) 
  11. Android 9.0+ (Chrome) 
  12. Android 9.0+ (Samsung internet) 

If you use a browser that’s not on this list, GenV and Me probably won’t work.  Contact us at genv@mcri.edu.au or call 1800 436 888 (1800 Gen VVV) during business hours.

I opened GenV and Me - there is nothing for me to do.

I opened GenV and Me - there is nothing for me to do.

You can open the GenV and Me App or website at any time. However, if you’ve just done a survey (thank you!), it’s empty until your next one. Then we’ll send an email, SMS text or push notification.  

For now, you can follow GenV on Instagram or Facebook for the latest news.   

I got my message saying the survey is ready, but not the email or text message to log in. Any tips?

I got my message saying the survey is ready, but not the email or text message to log in. Any tips?

Check your spam or junk folder. If you still don’t have your email or text, contact us at genv@mcri.edu.au or call us on 1800 GEN VVV during business hours. 

I’ve lost my email or SMS with links to login. How do I login?

I’ve lost my email or SMS with links to login. How do I login?

Visit genv.weguide.com.augenvandme-app.weguide.com.au. 

Reset your password by entering your email or mobile number and clicking ‘forgot password’.  

Still not in? Contact GenV at genv@mcri.edu.au or call us on 1800 GEN VVV during business hours. 

My app is crashing. How can I do the survey or troubleshoot?

My app is crashing. How can I do the survey or troubleshoot?

Close your browser, or force close the application. If you are on an Apple device (iOS) and are using our app, click here to read how to force close an app.  If you are on an Android device, click here to learn how to force close an app. 

If the app isn’t working, you can try the website (genvandme-app.weguide.com.au). 

Still not in? Contact GenV at genv@mcri.edu.au or call us on 1800 GEN VVV during business hours. 

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