Here are some Viva participant frequently asked questions. If you do not find your question below, please feel free to contact us at anytime by phone or email: 617-867-4251; Text: 617-553-6698; E-email: Project_Viva@hphc.org
How much longer is Project Viva going on for?
Project Viva will continue as long as we have funding and the support of Viva participants like you! Most of our financial support comes from grants from the National Institutes of Health (NIH), with each grant lasting for no more than 7 years. Every few years, we apply for a new round of funding to continue the study. One unique aspect of Project Viva is that we are one of the longest running birth cohort studies in the country. We have followed the same group of participants for over 18 years and our research is still ongoing. The biggest rewards in studies like Project Viva come over the long term!
Can I participate on my own, without my child or parent?
Yes, in fact, our study is now in a new chapter where we are focusing on mothers and young adults as separate study participants instead of as pairs. At this point, all Project Viva children are over 18 years old, meaning they are considered legal adults and therefore, able to consent to participate in the study for themselves. We launched the Women’s Health Visit 1 in April 2022 and will be launching the Young Adult Visit soon. We hope that you are excited to continue contributing to groundbreaking science in the upcoming years with Project Viva!
I moved. Can I still participate?
Yes! Even if you have moved away from the Boston area, out of Massachusetts, or even out of the country, you can still participate with Project Viva. We know that many of our Viva “kids” are now young adults, who may be in college, in the workforce, or living away from home. For those who are unable to participate in person, you can still participate via e-mail, mail, or phone. Occasionally we can travel outside of New England to complete in-person visits with participants who have moved out of the area. If you have moved, please call our hotline or email us to update your contact information at 617-867-4251, email us at Project_Viva@hphc.org or text us at 617-553-6698.
Can I get my other kids involved in the study?
Unfortunately, with our current study design, we cannot enroll your other children into Project Viva. Our enrollment period lasted from 1999-2003.
What happens with my information? How do you protect my confidentiality?
Federal privacy regulations provide safeguards for privacy, security, and authorized access. Your study results and your answers to questionnaires are kept strictly confidential. We use a number instead of names when we evaluate the information you give us. Information is stored in locked and password-protected files and identified by a study number only. The key that links your name with the study number is kept in a separate, secure location. The risk of unauthorized access to the information provided is minimized by an individual password that is assigned only to authorized study personnel. In publications and presentations of research results, we report overall group trends in the data rather than individualized cases.
What are genetics and epigenetics?
Genetics: DNA is the material that makes up your genes. Genes are passed from parents to child and contain the instructions that tell our bodies how to grow and work. We use any biospecimen samples, such as blood, that we have collected from you and stored to perform genetic analyses to be used for research.
Epigenetics: In addition to learning about how genes influence health, Project Viva is also interested in learning about signals inside cells called "epigenetics" (literally "around the genes"). These epigenetic signals tell your body which genes to turn on and off at different times, but they do not change the actual genetic code. If genes are like the body's "hardware" then epigenetics is like the "software” that tells the hardware how to work. They are essentially the instruction book for the genes. We aim to analyze epigenetics in blood samples collected at study visits.
What does it mean to consent to sharing epigenetic data on the consent form?
If you decide to consent to sharing epigenetic data on the consent form, your biospecimen data will be stored in a secure database that can only be accessed by approved research collaborators. Biospecimens will not be labelled with your name or any other identifying information. Approved research collaborators will use these biospecimens for research purposes only to study how people’s behaviors and environment have caused changes in the way their genes work.
Why are you asking for my epigenetics data and what can you learn from this data?
We are asking to use your epigenetics data to study how a person’s daily life and environment can shape future health outcomes. Previous studies show that the environment may affect the health of multiple generations in one family. Environmental exposures and behaviors can change a person’s epigenetics, which are the markers and structural changes that direct how genes are read and understood. These markers and changes form a “molecular memory” that can be passed down across generations. For example, if a pregnant woman is exposed to a chemical, her children’s and even possibly grandchildren’s health may be impacted through epigenetic changes.
If I am only able to complete a remote visit, can I still consent to sharing epigenetic data?
Yes. We are asking for your consent to share data and biological samples related to genetics and epigenetics from blood samples we collected at any of your past Project Viva in-person visits. Since this information can be derived from any past blood sample, your remote participation does not impact your ability to participate in genetic and epigenetic studies.
Questions about the Women’s Health Visit 1
What can I expect at the Women’s Health Visit?
We are excited to be offering visits in-person again and we look forward to working with you! The visit should take around 2 hours to complete and is similar to what you may have done at the last in-person visit. This visit involves:
-A Short Physical Performance Assessment
-A take-home Actigraph watch to track your physical activity and 7-day sleep e-diary
-We will also ask if you would be willing to provide blood and urine samples and do up to three DXA body scans if you did not get the chance to complete these components fully as part of a Mid-Teen Visit between 2017-2021.
Are you able to accommodate my busy schedule?
We’ll do our very best! We offer early morning, evening, and weekend appointments. It is very important to us and the research study that we see as many of our participants as possible in-person. If it is more convenient for you, our research assistants can drive to you to complete a visit from the comfort of your own home. If you cannot see us in-person, we would like you to complete the visit components that can be done remotely.
Do I need to come to the Visit with my child?
Our study is now in a new chapter where we are focusing on mothers and young adults as separate study participants instead of as pairs. We are now inviting Viva moms to participate in Women’s Health visits, separate from their adult child.
What about transportation to the Fenway Landmark Center office?
Our visit room is located at 401 Park Drive, Boston, MA 02215. We would love for you to visit us at this location, if possible. Additionally, if you can visit us in Boston, your parking will be paid for the entire day in our garage, giving you the perfect excuse to explore the area or try Fenway’s new dining experience at the critically acclaimed Time Out Market.
What is the purpose of the DXA scan? Is there radiation exposure?
DXA measures body composition and bone density. We will provide loose fitting clothes and ask that you lie on an open table for up to three body scans if you did not get the chance to complete this component fully as part of the Mid-Teen Visit between 2017-2021. The amount of radiation from a full body DXA scan is very small, about the amount one would get on a transcontinental flight from Boston to California.
Why do you take blood and urine samples?
In these samples, we look for hormones, nutrients, and other environmental exposures that tell us a large amount about one’s health. We will only ask if you would be willing to provide blood and urine samples if you did not get the chance to complete this component fully as part of the Mid-Teen Visit between 2017-2021.
Do I have to complete all of the visit components?
Each visit component has been carefully selected to give us the highest quality data, while causing the least amount of discomfort. That being said, all portions of the visit are voluntary. We ask that you complete all portions of the visit with which you are comfortable.
Can we find out the results of the measures that are done?
We will provide you with the results of your fasting blood draw, bone density scans, Montreal Cognitive Assessment, and sleep actigraphy data. If you have questions about the results of any of these tests, we ask that you contact your primary care provider to discuss those questions. We don’t routinely provide results of other measures because many of our results are not diagnostic of specific conditions, but rather, are used strictly for research purposes.
Questions about Annual Surveys
What if I don’t know or am unsure of an answer to a survey question?
Project Viva strives to have accurate and complete data, but we understand that sometimes information is not always readily available. We ask participants to complete surveys to the best of their abilities and if there is ever a question that they do not have an answer to, they can always skip it.
Why have I received the same survey multiple times throughout the year? Do I need to complete all of them?
Every year, Project Viva sends out surveys to participants. We may send the surveys via email or in the mail, depending on what contact information we have for that participant and what the participant’s preferences are. If we do not receive the returned survey that month, then we send reminders until we receive a completed survey back. If you receive multiple yearly surveys corresponding to the time period (e.g., 2022 Annual Survey), you only need to complete one survey.
How does Project Viva take into account the season in which we fill out the yearly survey?
Project Viva sends out its survey throughout the year. As a result, there could be seasonal differences in reported physical activity time, electronic use, or even eating habits. To account for seasonal differences, we adjust for date of completion in statistical models. This approach allows us to produce results that are independent of these seasonal differences. Please report your answers based on the time frame of the question (e.g. "Within the last 30 days, how often have you…."), and we’ll do the rest!
Why do you ask some of the same questions repeatedly?
We ask some of the same questions from year to year to understand how health and behaviors change over time. For example, in boys, asthma most commonly develops during the elementary school years and symptoms may improve during adolescence, whereas in girls, asthma may not develop until adolescence. Only by asking the same questions every year can we understand how health evolves. We know it can seem redundant at times to continue answering the same or similar questions, but these responses are very important to us and are used in many of our publications. Thank you for your patience!
How many moms & young adults are in the study?
2,100 moms in Project Viva delivered a child who then became a Viva child, and almost 1,500 are still involved!
How is the project funded?
Project Viva is funded primarily by research grants from the National Institutes of Health.
Why is Project Viva splitting to Moms and Young Adults into two cohorts?
As our cohort ages, we are pivoting from being a study of mothers and children to becoming a study of women and young adults. This refocus entails so many changes--for example, instead of asking about baby foods, we ask about fast food; instead of asking about morning sickness, we ask about hot flashes. Nevertheless, our scientific focus on how the time around pregnancy is a sensitive period for future health remains the same. Project Viva will continue as long as we have funding and the support of participants like you!
What is ECHO and how does it relate to Project Viva?
ECHO, or the Environmental Influences on Child Health Outcomes Program, is a seven-year initiative started by the National Institutes of Health aimed at understanding the effects of environmental exposures on child health and development. ECHO will provide funding to many existing, longitudinal studies, like Project Viva, with the goal of investigating environmental exposures on child health and development. Project Viva will participate in ECHO by sharing standardized data elements that have been collected in the past or will be collected during present or future Project Viva visits. We are excited to join dozens of impressive pediatric cohorts to help discover ways to improve the health of future generations of children and adolescents!
What are some of the research results? Where are these results published?
We have already learned a lot from all of our Project Viva participants! Our results have been published in numerous medical journals and publicized in the popular press, such as the New York Times, Boston Globe, NPR, and HBO’s Weight of the Nation. Project Viva findings have impacted national policies about diet during pregnancy, childhood obesity, and development of asthma. Please see the Research section of our website for a list of publications and recent news articles.
What do I do if I have a question or concern?
Please call our hotline number at 617-867-4251, email us at Project_Viva@hphc.org, or text us at 617-553-6698.
Ask Us Anything
We gave Project Viva participants the opportunity to send in their questions about the study for our Principal Investigators, Dr. Emily Oken and Dr. Marie-France Hivert. Marleny Ortega, long-time Project Viva Phlebotomist and Sr. Project Coordinator, sat down with Dr. Oken and Dr. Hivert to discuss and respond to these questions. The following video is a recording of their conversation with a transcript linked below for your convenience and accessibility. Thank you to everyone who submitted questions about Project Viva, we hope you learned something new!