WELCOME
COMMUNITY YOUTH STUDY
SINCE 1990
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
We’re excited to invite you to take part in our new research study. Led by Dr. Kerstin Pahl and her colleagues at NYU Langone Health and the Nathan Kline Institute, our study focuses on “Structural Adversity and Life-Course Social Determinants of Stress Regulation and Epigenetic Aging in Midlife Adults.”
We’re exploring how life experiences—like discrimination, financial challenges, and family relationships—affect both physical and mental health.
Participating is easy! You’ll complete surveys, have your blood pressure and body measurements taken, and provide saliva and blood samples. Some participants may also be invited for an interview. Plus, there’s compensation for your time.
Remember, participation is voluntary. Feel free to reach out with any questions or express your interest by calling or texting us at (646) 988-5738 and (917) 938-4647, or emailing us at: cys@nki.rfmh.org
WHAT WILL BE COLLECTED AS PART OF THIS STUDY
We will give you everything you need to collect these samples at home. Don’t worry, it’s easy and the team will support you every step of the way
Blood Pressure
Will sent you a device to collect your blood pressure at home
DRY Blood SpotS
Dry spots samples will be collected from a finger prick
Saliva Sample
Saliva samples will be collected by you at home for two days
Online Survey
You will complete an online survey on your computer or phone
PLEASE FOLLOW THE VIDEO INSTRUCTION FOR SAMPLE COLLECTION AT HOME
Blood Spots
Saliva SAMPLE
Blood Pressure
meet the team
Kerstin (“Tina”)
Pahl
Michael
Kobor
Crystal
Fuller Lewis
Sharifa (“Shar”)
Williams
Helen-Maria
Lekas
Linda
Capobianco
Navin
Sanichar
Maggie
Ding
Daniela
Galvez
Pedro
Batista
Samantha
Marin
Sankhepo
Ndhlovu
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. Since the focus of our study is on how people’s attitudes, feelings, and behaviors change as they grow older, only those who have been part of the study since 1990 are eligible to participate.
I WANT TO PARTICIPATE, BUT I DO NOT LIVE IN THE NYC AREA ANYMORE. CAN I STILL PARTICIPATE?
Yes! You can still participate. This study is designed to be completed entirely from home, including at-home sample collection and an online survey. We will send you a package with everything you need, along with detailed instructions on how to collect and return the samples to us. Our research staff will assist you throughout the process to ensure everything goes smoothly.
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 in the next phase of the study. Your phone number, e-mail address, 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 is the purpose of this study?
The purpose of this research study is to examine how social conditions influence well-being over time. Specifically, we are interested in examining how experiences such as discrimination, stigma, financial difficulty, and inequality affect people’s physical and mental health, as well as what characteristics and resources may help people cope with these experiences. Information for this part of the study will come from subjects’ responses to a survey, blood pressure readings, body measurements of height, weight, hip and waist, saliva samples, and blood spots collected with a finger prick. These will provide biological and genetic data about health, stress, and well-being.
who is eligible to particpate?
We are asking individuals who have taken part in at least three previous waves of the research study and agreed to be contacted about future research.
How many other people will be in the study?
There will be a total of 450 participants in part one of the study. You may be invited to participate in Part two. Part two of this study will involve completing an additional one-time interview.
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.
Will I be paid for being in this study?
You will receive a $220 gift card for completing all of the study procedures in Part one of this study, which includes completing the survey, giving saliva and blood samples, blood pressure, resting heart rate, and body measurements.
What other choices do I have if I do not participate?
Participation in all waves of the study is completely voluntary. If you decide to participate, you are free to leave this study at any time without penalty or loss of benefits to which you would otherwise be entitled. Leaving this study will not interfere with your relationship with NYU Langone Health.
for HOW LONG WILL STUDY CONTINUE?
We are dedicated to continuing this study as long as we have your participation. This particular wave of the study is expected to last about 5 years
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!