WELCOME
COMMUNITY YOUTH STUDY
The Community Youth Study started in 1990 when our research group was based at the Mount Sinai School of Medicine in the East Harlem community. They were interested in including the life experiences of adolescents from our ethnically and racially diverse local community into our research program on adolescent development. At the time, ethnic and racial minority groups had been given very little attention in the national body of research on adolescent development. Thirty years later, we’ve completed nine waves of study and are currently enrolling for our tenth wave. Of these ten waves, seven have been open to the whole cohort who has participated over the years, while three waves of study were more specialized and had different eligibility criteria.
CURRENT STUDY
- Stressful experiences, including discrimination and socioeconomic disadvantage
- Individual characteristics and resources that may help you cope with these experiences
meet the team
Kerstin (“Tina”)
Pahl
Sharifa (“Shar”) Williams
Lisa
wang
Linda
Capobianco
Pedro
Batista
daniela
galvez
Ariadna
Capasso
Muazzez ("melike") Aksoy
Samantha
Marin
DeVante (“DJ”) Cunningham
get in touch!
If you need to reach the team or are interested in participating feel free to contact us!
We hope that you and your family are safe and healthy during these challenging times.
| Phone: (917) 938-4647 |
| Email: cys@nki.rfmh.org |
Frequently Asked Questions
I have a friend/relative who wants to join the study. Are you accepting new participants?
Unfortunately, we do not accept new participants. Because the focus of our study is on how people’s attitudes, feelings, and behaviors change as they grow older, only people who have been part of the study since 1990 are eligible for participation.
I WANT TO PARTICIPATE, BUT I DO NOT LIVE IN THE NYC AREA ANYMORE. CAN I STILL PARTICIPATE?
Yes! You can still participate in our online survey. We recently moved our consent process and survey to an online format that you can complete on any computer or tablet with internet access.
WHY DO YOU NEED THE NAMES OF THREE OF MY FRIENDS/RELATIVES?
We ask for contact persons in case we have trouble getting in touch with you at the next phase of the study. Your phone number, e-mail address, and mailing address, and the contact information you provide for your friends/relatives will only be used by the research team for study purposes, and it will never be shared with anyone unaffiliated with the study.
I WANT TO PARTICIPATE, BUT I DO NOT HAVE ACCESS TO A COMPUTER/TABLET OR TO THE INTERNET. CAN I STILL PARTICIPATE?
Yes! While our consent process and survey have been moved to an online process, we have also adapted the process for conducting phone/video consents and phone/video surveys. Just notify one of our staff members that you are interested in participating in the study but would like to complete the study over the phone or via video call, and we will happily schedule a time with you to complete the study materials.
WHAT PRECAUTIONS AND SAFETY PROCEDURES DO YOU HAVE IN PLACE FOR COVID-19?
Under the direction of the National Institutes of Health, New York University School of Medicine, and the New York State Department of Health, we have modified our protocols and interview procedure to ensure the safety of our staff and our participants, keeping in line with recommendations to practice social distancing and the use of PPE.
Our current study has been separated into three sections: online survey, at-home saliva collection, and in-person blood collection along with body measurements.
We have limited our in-person section of the interview to 30 minutes. For visits conducted at our study site, we will follow our institute’s COVID-19 procedures laid out for office visits.
For visits conducted at the participants’ homes, we will use our institute’s offsite COVID-19 screening tool, follow institutional guidelines for working with research participants, and use personal protective equipment (PPE) and sanitize all supplies/materials before and after use to match office policies.
We believe that the COVID-19 public health situation highlights the disparities that our research examines, making it even more important now to understand how these stressful experiences can affect people’s health.
HOW DO YOU PROTECT MY PRIVATE HEALTH INFORMATION?
Since our study began 30 years ago, we have never had a data breach affecting your private contact information or private health information. We strive to protect your health information like it is our own, and we take many precautions to ensure the safety and confidentiality of your private health information, while keeping our study in ethical compliance with both New York University and Nathan Kline Institute.
All study team members must undergo research ethics training and approval by the Institutional Review Board before they can work on this research study, and all communications on the study will come from the Principal Investigator or study team. When you were first enrolled in the Mt. Sinai Community Youth Study back in 1990, you were assigned a unique identifying number (7-digit code), called a study ID number, that we have used to link all of your surveys and study information from the past waves of study. When we send your biological samples to our third-party labs to analyze the samples, they never receive any personal identifying information and only receive your unique study ID number.
All hardcopies of your consent forms, paper surveys, and other hardcopy health information are kept in locked file cabinets behind locked doors at our safe and secure study site. All electronic copies of your survey data, biomarker results, and other electronic versions of your health information are kept on New York State regulated and protected network drives. Furthermore, we never analyze or publish any participant’s responses individually. We create one electronic file that combines all of the participants’ responses and does not contain any names. This file is used by the statistician and is stored on a password-protected computer in a locked office.
We have also obtained a federal Certificate of Confidentiality so that we can refuse to disclose your responses to anyone outside of the study, even in a court of law. The only exception to this confidentiality is if your responses indicate that you intend to hurt yourself, or that you have abused a child or an elderly person.
WHY ARE YOU WANTING TO COLLECT BIOLOGICAL SPECIMENS IN ADDITION TO THE SURVEYS?
While previous waves of study usually only involved a paper, phone, or online survey, our current study involves the collection of a few biological samples (saliva, blood spots) and body measurements in addition to our online survey. With the surveys you have completed over the years, we have been able to help characterize who you are, giving us a picture of your thoughts, feelings, and experiences. However, in order create a picture of your physical health—particularly your stress levels and how your body responds to stress—and understand the connection between your characteristics, thoughts, feelings, and experiences to your physical health, we would like to collect both survey data and biological data.
I REMEMBER THAT YOU INTERVIEWED MY CHILD/PARTNER IN THE PAST. ARE YOU PLANNING TO DO THAT AGAIN?
At this time, we will not ask your child or partner to participate. However, you can be assured that we will always notify you before we invite your child and/or partner to participate in a survey.
HOW LONG WILL THE COMMUNITY YOUTH STUDY CONTINUE?
We are dedicated to continuing this study as long as we have your participation.
I’VE RECENTLY MOVED OR AM PLANNING TO MOVE SOON. HOW DO I LET YOU KNOW?
You can email us at cys@nki.rfmh.org, call us at (917) 938-4647, or use the contact form on this webpage. Thank you for staying in touch!