Dear prospective study participant,

We sincerely thank you for your interest and willingness to participate in our study "trans*forming care - a survey of adult trans people to improve the care of trans* children and adolescents." With this anonymous scientific survey, we invite you to share your experiences, challenges, and wishes. The survey is part of a broader scientific initiative and specifically targets adult trans* individuals to help sustainably improve the treatment and support of young trans* people in the future.

Purpose of the Study

The study is aimed at adult trans* individuals and seeks to better understand their experiences with the healthcare and support system. By retrospectively reviewing these experiences, we aim to gather important insights that will help us identify the care needs of trans* children and adolescents and adjust healthcare provision accordingly. The research project will also identify challenges and barriers in care to develop targeted recommendations for improved psychological and medical counseling and treatment, as well as expand the scientific data on the care of trans* individuals.

Process and Duration of Participation

The survey is conducted by Charité – Universitätsmedizin Berlin and led by Prof. Dr. Sibylle Winter. The exact period for participation in the study will be adjusted flexibly depending on the response rate, with the goal of reaching at least 50 participants. An initial estimate for the data collection period is between January 2025 and April 2025, but this may vary depending on the number of participants.

Participation is through an online questionnaire, which takes approximately 30 to 45 minutes to complete. During the survey, you can pause and resume the questionnaire at a later time.

The questionnaire was developed in collaboration with experts and members of the trans* community, and it allows participants to provide comprehensive feedback about their personal experiences and impressions. It includes some demographic information (e.g., age, gender identity, nationality) and other research-relevant details. Following that, you will answer questions about topics such as your experiences with discrimination, coming-out processes, measures during your transition, and challenges in accessing healthcare services.

The data is collected anonymously, so it is not possible to trace the information back to you. The data will be securely stored and retained for ten years after the study is completed. Afterward, the data will be analyzed and published for scientific purposes in an anonymous manner.

Potential Risks

Emotional distress may occur during the survey as personal experiences and memories are addressed. Should you experience any unwanted emotional reactions during participation, we are available to offer support and can refer you to counseling services. Our contact information is provided below and will also be available after the online survey is completed.

Potential Benefits

There may not be a direct benefit for you personally. However, your participation will play a crucial role in gaining insights to optimize healthcare for trans* children and adolescents. The goal when providing care for young trans* and non-binary people is always to make decisions that are in the best interest of the young person, ideally supported by all involved parties, to ensure the best possible developmental environment. Thus, we aim for a prompt, substantial, and ideally sustainable improvement in quality of life.

Voluntary Participation and Withdrawal from the Study

Participation in this study is voluntary. Since this is an anonymous survey, withdrawal is only possible during the questionnaire completion process. Once you have submitted the questionnaire, your responses are final and cannot be deleted or altered. Your data will only be saved if you complete and submit the questionnaire.

Data Protection

All data collected in this survey will be processed anonymously and stored in strict compliance with the EU General Data Protection Regulation (GDPR). No list of identifiers is maintained that would allow your responses to be traced back to you. Therefore, your responses cannot be linked to you personally.

Withdrawal of Consent and Deletion of Personal Data

Since this is an anonymous survey, once you have submitted the questionnaire, your responses will no longer be associated with you. Thus, it is not possible to delete or modify your data after submission. After submitting the questionnaire, your data cannot be linked back to you. For this reason, it is not possible to provide information about the entered data, make corrections, provide copies, or delete the data. However, you can request information about the project at any time and, if necessary, file a complaint with the relevant data protection authority. The contact details are provided at the end of this information.

Data Storage and Retention

The anonymous data collected in this survey will be processed in accordance with the Berlin Data Protection Act (BlnDSG) and the EU General Data Protection Regulation (GDPR). Your data will be stored anonymously, so that no conclusions can be drawn about your identity. It will be securely stored for ten years after the study is completed and then destroyed. During this period, the anonymized data will be used exclusively for scientific analysis.

In accordance with the new EU General Data Protection Regulation (GDPR), we are obligated to provide each patient with the contact details of the persons responsible for data processing/data protection: Responsible persons for data processing:

For any questions, you may contact the study leader:

Prof. Dr. med. Sibylle Winter 
Phone: 030 450 566653, 
Campus Virchow Klinikum, 
Augustenburger Platz 1, 
intern: 
Mittelallee 5a, 
13353 Berlin

Kind regards,
Prof. Dr. med. Sibylle M. Winter