Thank you for your interest in the CHILDatabase! Please complete the following form if you are interested in being contacted to participate in studies for children (starting in infancy) at UB! By completing this form, you are not committing to participating in any study. Rather, your information will be stored in a secure database (CHILDatabase) and used to contact you if your child may be eligible for a study.
The CHILDatabase has been approved by the University at Buffalo IRB (STUDY00006420).
University at Buffalo Institutional Review Board (UBIRB)
Office of Research Compliance | Clinical and Translational Research Center Room 5018
875 Ellicott St. | Buffalo, NY 14203
UB Federalwide Assurance ID#: FWA00008824
Title of research study: UB Child Database (CHILDatabase)
Version Date: 2022-04-26
Investigator: Bulgarelli, Federica
Key Information: The following is a short summary of the purpose of this database to help you decide whether or not to be a part. More detailed information is listed later on in this form.
Why am I being invited to take part in a research study?
You are being invited to sign up for this participant database because you are the parent or legal guardian of a child under the age of 18 (or pregnant with a child).
What should I know about a research study?
- Someone will explain this research study to you.
- Whether or not you take part is up to you.
- You can choose not to take part.
- You can agree to take part and later change your mind.
- Your decision will not be held against you.
- You can ask all the questions you want before you decide.
Why is this research being done?
The purpose of this database is to create a pool of families and their children who may be eligible to participate in studies for individuals under the age of 18 at the University at Buffalo. This will allow researchers at the University at Buffalo to recruit participants for specific research participation opportunities based on the child's age.
How long will the research last and what will I need to do?
We expect that filling out the survey to join the database will only take about 5 minutes.
You will be asked to give your contact information and fill out some demographic information about yourself and your children.
More detailed information about the study procedures can be found under "What happens if I say yes, I want to be in this research?"
Is there any way being in this study could be bad for me?
The study poses minimal risks to you as a participant. Besides the child's name and date of birth, as well as a method of contact, you may skip any questions in the prescreening form that make you uncomfortable.
More detailed information about the risks of this study can be found under "Is there any way being in this study could be bad for me? (Detailed Risks)"
Will being in this study help me in any way?
We cannot promise any benefits to you or others from your taking part in this database. However, possible benefits include understanding more about research in developmental. In addition, individual studies may offer you benefits.
What happens if I do not want to be in this research?
Participation in this database is completely voluntary. You may choose not to enroll in this database.
Detailed Information: The following is more detailed information about this database in addition to the information listed above.
Who can I talk to?
If you have questions, concerns, or complaints, or think the research has hurt you, talk to the faculty sponsor at email@example.com. You may also contact the research participant advocate at 716-888-4845 or firstname.lastname@example.org.
This database has been reviewed and approved by an Institutional Review Board ("IRB"). An IRB is a committee that provides ethical and regulatory oversight of research that involves human subjects. You may talk to them at (716) 888-4888 or email email@example.com if:
- You have questions about your rights as a participant in this research
- Your questions, concerns, or complaints are not being answered by the research team.
- You cannot reach the research team.
- You want to talk to someone besides the research team.
- You want to get information or provide input about this research.
How many people will be studied?
We expect about 1000s of families will sign up for the database over time.
What happens if I say yes, I want to be in this research?
If you agree to participate in this database, you will answer some questions about yourself and your children so they can be added to a database of potential participants for studies at the University at Buffalo. The questionnaire will last at most 10 minutes. Your identity and data will be kept confidential. The data that you contribute to the database will be kept in a secure location, and only the experimenters will have access to it in order to allow faculty at the University at Buffalo to recruit your child for studies. In order to monitor this study, representatives from federal agencies such as NIH (National Institutes of Health) and OHRP (Office of Human Research Protection) or representatives from the UB Institutional Review Board (UBIRB) may inspect the research records, which may reveal your identity.
What happens if I say yes, but I change my mind later?
You can leave the database at any time and it will not be held against you. You can simply close the survey at any point when taking it, or email the coordinator to request yourself to be taken out of the database.
Is there any way being in this study could be bad for me? (Detailed Risks)
If any of the questions in the questionnaire are ones that make you uncomfortable, you may freely skip them or suspend your participation. We take many safeguards to preserve the confidentiality of the personally-identifiable information in the survey (contact information), but we cannot promise confidentiality given that this study may be monitored. In particular, your contact information may be passed on to other investigators in the department in order to allow you to enroll in studies for credit or extra credit.
What happens to the information collected for the research?
Efforts will be made to limit the use and disclosure of your personal information, including research study and medical or education records, to people who have a need to review this information. We cannot promise complete secrecy. Organizations that may inspect and copy your information include the IRB and other representatives of this organization.
If identifiers are removed from your identifiable private information or identifiable samples that are collected during this research, that information or those samples could be used for future research studies or distributed to another investigator for future research studies without your additional informed consent.
If you agree to participate in this database, please select "I agree to participate in this database" and continue to the survey.