INSPIRE-AYA is a research project with online and mobile application resources for young adult cancer survivors who are 1 to 5 years after their cancer diagnosis and at least 6 months after their last treatment for cancer. The INSPIRE–AYA Project is created by cancer clinicians and researchers across the U.S. including at Fred Hutchinson Cancer Center in Seattle. It offers a website and mobile app with resources and care for survivors treated at many cancer centers in the United States:

• Information and tools to improve health
• Strategies for rebuilding mood
• Treatment Summary and Survivorship Care Plan (Plan) for you and your health care providers to make sure you get the health care you need as a cancer survivor.

For those who wish additional support, it also offers coaching calls to help people use the resources in INSPIRE-AYA.

What is the INSPIRE-AYA Project?

The INSPIRE–AYA Project is research supported by a grant from the National Cancer Institute (you can check the website: clinicaltrials.gov search for NCT04593277, or search online for grant number: U01 CA246659). The purpose of the project is to create and test an internet, social media, and mobile app program to address common concerns of young adult cancer survivors who are 1 to 5 years after diagnosis.

Transplant centers participating in INSPIRE-AYA are:

• Fred Hutchinson Cancer Center, formerly the Seattle Cancer Care Alliance
• Dana Farber Cancer Institute
• University of California Los Angeles
• Memorial Sloan-Kettering Cancer Center
• University of Pennsylvania Abramson Cancer Center

The project is coordinated by Fred Hutchinson Cancer Center.

What is Fred Hutchinson Cancer Center?

Fred Hutchinson Cancer Center is in Seattle, Washington. It is one of 49 National Cancer Institute-designated comprehensive cancer centers nationwide..

Why is the INSPIRE-AYA Project important?

We know that AYA survivors have a higher risk of health problems than people of the same age who have not had cancer. As the number of survivors grows, improving long-term health and quality of life for survivors becomes ever more important.

Who is participating in the project?

The project will include up to 1200 adults who are 2 to 5-year survivors of cancer.

How will my information be used during the project?

Our scientists will use your information to see if the project has helped to reduce common health concerns in long-term young adult cancer survivors. We will look at whether this website and mobile app help people like you to make the most of their lives and their health. The program focuses on tools for you to know what you need to do to be as healthy as possible, to track your tests and test results, and to feel good while reducing stress.

Is my information kept confidential?

The information you provide is completely confidential and used only for the INSPIRE–AYA Project. Each participant is assigned two identification numbers, which are saved into a database. One number is used when we approach you to participate in INSPIRE. The second number is used if you decide to enroll in INSPIRE–AYA. The database is carefully secured and is accessible to only a small number of our project staff. All staff members must be trained in confidentiality and human research. They also must have a unique password that is changed several times a year. Participants are only identified by their assigned ID number, and never by name or personal information. See our Privacy Policy for more details about confidentiality.

How can I contact the INSPIRE Project?

You can email our project staff at INSPIRE-AYA@fredhutch.org. Or you can call us at our toll free number: 1-888-344-5678. We return messages within 3 business days.

How can I get more information about my rights as a research participant?

Contact IRO Director, Institutional Review Office, Fred Hutchinson Cancer Research Center at 206-667-5700 or by email: IRO@fredhutch.org.

The INSPIRE–AYA team includes a group of clinicians and researchers who have been working together for over 10 years to improve the lives of cancer survivors. We are here to make your life better too!

The INSPIRE–AYA project includes 6 sites in Seattle, Boston, Los Angeles, New York City, and Philadelphia. The coordinating center is in Seattle at Fred Hutchinson Cancer Center (Fred Hutch) and we will be sending you messages after you are on the project. Survivors who participate have been treated at the Seattle Cancer Care Alliance, Dana Farber Cancer Institute, University of California Los Angeles, Memorial Sloan-Kettering Cancer Center, and University of Pennsylvania Abramson Cancer Center. At Fred Hutch we have been working with cancer survivors for over 25 years. The mission of our program is to improve the lives of people living after cancer. Meet the team!

• Dr. Karen Syrjala is Professor Emerita of Fred Hutchinson Cancer Center and the University of Washington. Building from her research understanding the needs and preferences of cancer survivors, she has developed successful programs that provide tips and tools for survivors and their caregivers. She and Dr. Baker have collaborated on numerous AYA cancer survivor projects.
• Dr. K. Scott Baker leads the INSPIRE–AYA Project team of scientists and clinicians. He directs the Survivorship Program at Fred Hutch and also directs the Pediatric Blood and Marrow Transplant Program. Heand Dr. Syrjala have collaborated on numerous AYA cancer survivor projects. He leads care for AYA cancer survivors. His research is focused on late cardiovascular complications that can develop as a result of cancer treatment. If you would like to know more about his research program, click here for information.
• Dr. Jean Yi is the INSPIRE–AYA project director at Fred Hutch. She has extensive experience with contacting and working with cancer survivors and others who live far away from their treatment centers or a research program. She has experience with three previous similar studies looking at online resources for people after cancer. She is especially interested in how living with survival issues can take a toll on individuals and couples.
• Dr. Casey Walsh is a Research Associate in Dr. Scott Baker’s group. She works with the Young Adult Advisory Panel we have assembled from all of the sites as they give us feedback about the study. Dr. Walsh has an interest in improving the health of AYA survivors and developing interventions for them.
• Sheri Ballard is the project manager for the INSPIRE–AYA project at Fred Hutch. She coordinates study activities and keeps track of our progress to make sure everything runs smoothly and securely. If you have email questions or call the phone line, she will likely be the person who answers. She is here to answer any study-related questions you may have.
• Dr. Patricia Ganz leads the INSPIRE–AYA project at the University of California, Los Angeles (UCLA). At UCLA she is Professor, Health Policy & Management, and Professor of Medicine (Hematology-Oncology) UCLA-Fielding School of Public Health & David Geffen School of Medicine School of Medicine. She has worked with the INSPIRE–AYA team for over 10 years and participated in the development of the project. Dr. Ganz will answer questions for survivors treated at UCLA.
• Dr. Linda Jacobs co-leads the INSPIRE-AYA project at the University of Pennsylvania Abramson Cancer Center. At Abramsen she is Director for the Development of Cancer Survivorship Clinical Programs, Research and Educational Initiatives. She has worked with the INSPIRE–AYA team for over 10 years and participated in the development of the project. Dr. Jacobs will answer questions for patients treated at the University of Pennsylvania.
• Dr. Steven Palmer co-leads the INSPIRE-AYA project at the University of Pennsylvania Abramsen Cancer Center. At Abramsen he is a Behavioral Research Scientist. He has worked with the INSPIRE–AYA team for over 10 years and participated in the development of the project. Dr. Palmer will answer questions for patients treated at the University of Pennsylvania.
• Dr. Ann Partridge leads the INSPIRE-AYA project at the Dana Farber Cancer Institute. At Dana Farber she is Vice Chair of Medical Oncology. She has worked with the INSPIRE–AYA team for over 10 years and participated in the development of the project. Dr. Partridge will answer questions for patients treated at Dana Farber.
• Dr. Danielle Novetsky Friedman leads the INSPIRE-AYA project at Memorial Sloan-Kettering Cancer Center (MSK). At MSK she provides care for cancer survivors and conducts research to better understand long-term health problems related to cancer and its treatment. Dr. Friedman is a pediatric oncologist and a leader of cancer survivorship at MSK. She will answer questions for patients treated at MSK.