Exploring gender dysphoria and its outcomes for young people.
Adolescent and Young Adult Gender Dysphoria Outcomes Study
Closing the research gap on adolescents and young adults living with gender dysphoria.
The Adolescent and Young Adult Gender Dysphoria Outcomes Study (AYAGDOS) is a research study of gender dysphoria that occurs during adolescence or young adulthood. Currently, we are enrolling gender dysphoric youth ages 13-21, as well as the parents of gender dysphoric youth of those ages, for the initial research phase. Participation requires completion of an Internet survey, is voluntary, and is not compensated.
We hope to follow research participants over several years to study their outcomes. For example, what percentage of gender dysphoric youth transition to the other sex, and what percentage of them decide not to transition? What factors predict what gender dysphoric youth decide? Are gender dysphoric youth happier if they transition?
On this website you can find more information about the study, including the research team. You can begin participating in the study. For answers to some frequently asked questions about participation, see here. You can contact us.
Research site: Northwestern University
Principal investigator: J. Michael Bailey
Northwestern IRB Number: STU00215665
BRANY IRB Number: 22-076-1188
Investigators: Lisa Littman and Kenneth J. Zucker
Additional site: The Institute for Comprehensive Gender Dysphoria Research
Gender dysphoria is discomfort with one’s birth sex (or if you prefer, sex assigned at birth).
There has been a sharp increase in gender dysphoria among adolescents and young adults during the past two decades. The increase has been especially large for natal females (or ifyou prefer, individuals assigned female at birth), whose gender dysphoria is first noticed during adolescence or young adulthood. This change has been so sudden that several important questions remain poorly understood by scientists, persons with gender dysphoria, and their families. For example: what are the most common outcomes for adolescents and young adults with gender dysphoria? Does this depend on whether birth sex is male or female? Is gender transition associated with long term happiness? What kinds of differences do parental attitudes and behaviors make?
During the past decade, gender dysphoria and related phenomena (such as transgender) have become increasingly controversial, both scientifically and socially. Scientifically, the marked increase in the rate of youth seeking treatment for gender dysphoria and identifying as transgender has raised the question of why. Does the increase reflect true cases of gender dysphoria which would have gone unnoticed until recently? Or does it reflect a new type of gender dysphoria caused by peers influencing each other to adopt transgender identities? No one knows, or could know, the answers to these questions. The available scientific evidence is just not there. Of course, different people have different (sometimes strongly held) opinions, but the science is not settled. Socially, bitter controversy has often divided those with different opinions on these matters. This sometimes applies even to gender dysphoric youth and their families.
About the study.
The Adolescent and Young Adult Gender Dysphoria Outcomes Study (AYAGDOS) is intended to collect data needed to shed light on the most important issues about gender dysphoria in youth. We are recruiting both gender dysphoric youth (ages 13-21) and parents/guardians of gender dysphoric youth. There is no financial compensation for participation.
This study will last several years. In the first phase being conducted now, we will recruit a large sample of gender dysphoric youth (specifically, ages 13-21). We will also recruit parents and guardians of gender dysphoric youth. (We hope to include both youth with gender dysphoria and parents from the same family. However, there is no requirement that both gender dysphoric youth and their parents participate. Either can participate without the other also doing so.) Participants who have gender dysphoria will complete a thorough survey related to the development and expression of their gender dysphoria. Participants who are parents (or other family members) of youth with gender dysphoria will complete a similar survey. Subsequently, we will follow participants periodically to see whether and how things have changed. Current plans are to follow up participants approximately every year.
Answers to some frequently asked questions can be viewed here.
If you wish to participate and are either a gender dysphoric youth from 13 through 21 years old, or the parent of a gender dysphoric youth in that age range, click here.
Who can participate?
You are eligible to take part if you are either:
A person from 13 to 21 years old (including 13 and 21) who is living with gender dysphoria.*
The parent or guardian of a person 13-21 years old who is living with gender dysphoria.
*Youth who are 13-17 years of age and live outside of the United States and Canada will need permission from their parent to participate.
What does participating involve?
Initial participation in this research involves two things:
First, to see if you are eligible, we will conduct a brief (approximately 10 minutes) video Internet interview. Second, you will complete an Internet survey that takes approximately 90 minutes. There is no compensation for participating in this research.
If you are a gender dysphoric youth, the survey asks about your childhood and adolescence, your family, your history and symptoms of gender dysphoria, your sexuality, and your mental health.
If you are the parent (or guardian) of a gender dysphoric youth, the survey asks about your gender dysphoric child’s childhood and adolescence, their history of gender dysphoria, their sexuality, their mental health, and your relationship with them.
We hope to follow up participants every year with much briefer surveys. But participating in this first wave does not commit you to future participation. You can decide at that time if you are interested.
Answers to some frequently asked questions can be found here.
If you participate, you will read and indicate your consent before taking the survey.The consent documents generally tell you what to expect, and what protections the research team has tried to provide. The consent form for gender dysphoric youth can be viewed here, and the consent form for parents of gender dysphoric youth can be viewed here. (Note that if you participate, you will be shown these documents again, and you will have to acknowledge your consent before taking the survey.)
I am eligible and interested. How do I participate?
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If you are the first member of your family to take part in the study
We will conduct a brief online interview to confirm your eligibility, register you for the study, and link you to the survey.
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If a participating family member invited you to join the study
You can provide information enclosed in your email invitation to register for the study now—or after a brief eligibility interview.
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If you were invited to join by someone other than family
You can provide the password enclosed in your email invitation to apply for fast-tracked registration for the study.
Research Team
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Principal Investigator
Dr. Bailey is Professor of Psychology at Northwestern University. His research has focused on sexual orientation, and how sexual orientation relates to gender diversity and dysphoria.
Dr. Bailey’s Google Scholar Page
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Principal Investigator
Dr. Littman has conducted research about adolescents and young adults with gender dysphoria (via parent report), individuals who detransition after gender transition, and individuals who desist from a transgender identification.
Dr. Littman’s Google Scholar page
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Co-Investigator
Dr. Zucker has studied gender dysphoria for most of his career. He is Past President of the International Academy of Sex Research, and Editor of Archives of Sexual Behavior. He was Chair of the Working Group for Sexual and Gender Identity Disorders for the American Psychiatric Association’s DSM-5.
Dr. Zucker’s Google Scholar Page
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Research assistants may be added as our team grows.
FAQs.
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“Gender dysphoria” is a term that describes the distress, discomfort, or unhappiness that some people feel when their perception of themselves does not match their natal sex (or if you prefer, “sex assigned at birth”). When the term “gender dysphoria” is used by a mental health professional or health care provider, it has a more specific definition that is used as a diagnosis. In this study, we are enrolling youth who feel gender dysphoric (by the general meaning), whether or not they have ever received a diagnosis of gender dysphoria from a mental health professional or health care provider.
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Persons with gender dysphoria, who are ages 13-21, and parents or guardians of persons 13-21 with gender dysphoria.
Participants must be English-speaking and live in the United States, Canada, the UK, the European Union (EU), or one of the countries from the following list: Australia, Austria, Belgium, Bulgaria, Canada, Czech Republic, Cyprus, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Israel, Italy, Latvia, Liechtenstein, Lithuania, Luxembourg, Malta, Netherlands, New Zealand, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, Switzerland, the United Kingdom, and the United States.
Youth who are 13-17 years of age and live in one of the above countries outside of the United States and Canada will need a parent's consent to participate.
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Our requirement for participation is that the youth is experiencing gender dysphoria, defined as discomfort with one’s birth sex (or if you prefer sex assigned at birth). We do not have requirements about how they identify (trans, nonbinary, not trans, desisted, etc). So, if the youth is currently experiencing gender dysphoria, the parents and youth are eligible. If the youth is not experiencing gender dysphoria, the family is not eligible.
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Participants complete a survey, which usually takes between 45 and 90 minutes.
If you are a gender dysphoric adolescent or young adult, the survey asks about your behavior, feelings, and mental health from childhood to the present, focusing especially on the details of your gender dysphoria.
If you are the parent or guardian of a gender dysphoric adolescent or young adult, the survey asks about your child’s behavior, feelings, and mental health from childhood to the present, focusing especially on the details of their gender dysphoria.
You can choose to answer–or not answer–any question.
You will have the option of permitting us to recontact you during the next phase of this research, in approximately one year. This will involve completing a much briefer survey. This is entirely optional–up to you.
You will also have the option of inviting one family member to participate in this research. If you are a gender dysphoric adolescent or young adult in the United States or Canada, or are 18 years of age or older outside the United States and Canada, you may invite one of your parents or guardians. If you are the parent or guardian of a gender dysphoric youth, you may invite your gender dysphoric child. This is entirely optional–up to you.
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No. There is no payment for participation.
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If you live in the United States or Canada, you can participate without involving any other person from your family. It is entirely up to you whether to involve your family member.
If you live outside of the United States and Canada and are 18 years of age or older, you can participate without involving another person from your family.
If you are 13-17 years of age and live outside of the United States and Canada, your parent will need to provide consent for you to participate.
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One main reason to involve multiple family members is to examine whether the information they provide is similar or different. Another main reason is that we are interested in some different information from different family members.
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No. Family members will not have any access to each other’s survey responses.
Contact.
If you have any questions or concerns, please do not hesitate to contact us.