Frequently Asked Questions

ACHIEVE stands for Assessing Cervical Cancer Healthcare Inequities in Diverse Populations.

We are doing this research study to learn more about the impact of social and structural inequities on cervical cancer treatment and survival outcomes. We want to learn new information about how to develop interventions, including healthcare delivery practice changes and policies to address the persistent gaps in cervical cancer survival in the United States.

We are asking you to take part in this study because you were identified by the New Jersey State Cancer Registry (NJSCR) or the Los Angeles County Cancer Surveillance Program (LACSP) as a person aged 21-79 years with a date of diagnosis between 2021 and 2025.

We will ask you to complete a baseline survey. The survey includes questions about factors relevant to your cervical cancer diagnosis, including your sociodemographic information (e.g., race, ethnicity, age, educational attainment), reproductive and medical history, healthcare access and encounters with clinical providers, and your experiences after your cervical cancer diagnosis and treatment. We will also ask you to complete a healthcare source form that will allow us to obtain medical information related to your cervical cancer diagnosis and treatment only. 12 months after enrollment and completion of the baseline survey, we will ask you to complete a follow-up survey. The follow-up survey will ask similar questions as the baseline survey but will seek to update any information that may have changed since you completed the baseline survey. This study will last approximately 5 years.

There are no major risks associated with the proposed research. Some participants may feel that the information collected during surveys is sensitive or potentially embarrassing. All participants will be informed that their answers will be kept confidential and that they may refuse to answer any question that makes them uncomfortable. A risk of taking part in this study is the possibility of a loss of confidentiality or privacy. Loss of privacy means having your personal information shared with someone who is not on the study team and was not supposed to see or know about your information. The study team will adhere to strict guidelines to keep all your information private to protect your privacy.

You may or may not receive direct personal benefits from taking part in this study. The possible benefits of taking part in this study include the potential for answering important questions about the factors that contribute to suboptimal cervical cancer treatment and poorer survival outcomes among individuals diagnosed with cervical cancer, which will be used to inform system-level practice and policy change to address the persistent inequities in cervical cancer survival.

There will be no costs to you for being in this study. In appreciation of your time and participation, we will give you up to $125 throughout the study period. You will receive $50 for completing the baseline survey, $25 for providing HIPAA authorization to obtain medical records, and another $50 for completing the 12-month follow-up survey.

Every effort will be made to keep your personal information confidential. To ensure that your information stays private, your data will be given a code number, and separated from your name or any other information that could identify you. The research file that links your name to the code number will be kept in a password-protected database. Only the Principal Investigator and the study staff will be able to see this file. This study is overseen by Institutional Review Boards ('IRB'). An IRB is a committee organized to protect the rights and welfare of people involved in research. In addition, this study is covered by a Certificate of Confidentiality from the National Institutes of Health. This means that the researchers cannot release or use information, documents, or samples that may identify you in any action or suit unless you say it is okay.

Taking part in this study is your choice. You can decide not to complete any parts of the study or withdraw any completed parts of the study at any time. Please tell one of the Researchers listed below if you decide to leave the study before it is finished.

• Dr. Adana Llanos at the Mailman School of Public Health at Columbia University Irving Medical Center by email: al4248@cumc.columbia.edu (mailto:al4248@cumc.columbia.edu)or phone: (212) 305-7358. • Dr. Jennifer Tsui at the University of Southern California Keck School of Medicine by email: tsuijenn@usc.edu (mailto:tsuijenn@usc.edu)or phone: (323) 865-3744.

Please reach out! You can contact a study team member via the Contact Us form on the webpage or by sending us an email to info@theachievestudy.org. A study team member will reach out to answer your questions or concerns.