I'm not in the study but it sounds like something I should do. How do I enroll? If you are not currently enrolled in the study, you may not be eligible to participate. A sample of survivors of childhood cancer were invited to participate in the LTFU if they were diagnosed between the years 1970-1986, were < 21 years at the time of diagnosis, and were diagnosed and treated at one of the participating centers. Currently, another 15,000+ survivors of childhood cancer are being recruited for an expanded study. Criteria for entry into this part of the LTFU include survivors of childhood cancer diagnosed between the years, 1987-1999, < 21 at the time of diagnosis, have a specific cancer diagnosis, and were diagnosed treated at one of the participating centers.
I've been in this study a long time. Nothing has changed. Why should I stay in the study? Participants enrolled in the study represent a sample of all the survivors of childhood cancer. While some survivors will be healthy, others develop complications from either their disease or treatment. Having a better understanding of who is at risk for developing problems will aid in identifying new treatment strategies. All participants who enrolled in the study are encouraged to continue. The results of the study will not be accurate if only those survivors who have problems continue to participate.
I've been healthy since I had cancer. Is my information still useful? Yes. The information you provide in the health update surveys is very useful for the same reason mentioned in the question above.
I think I was in this study a long time ago but I haven't gotten anything in the mail. Can I get back into the study? Yes. The LTFU welcomes you back. If you think you were in this study and want to find out, call our toll-free number at 1-800-775-2167.
My current health problems are unrelated to my cancer. It is sometimes difficult to relate some of the treatment given for a childhood cancer with a problem that develops in adulthood. It is by combining all the information provided by LTFU participants that investigators are able to make the connection between certain conditions and disease or treatment for cancer. For example, when an individual has a family history of heart disease, other family members may be at risk of heart disease. But, when coupled with the knowledge that an individual received one of the anthracycline drugs as part of their treatment, their risk of heart disease may even be higher.
What do you do with my personal information? The information you provide is held in the strictest confidence. Every person in the study has been assigned a unique LTFU study number and when you submit a survey or biologic specimen, your name and other personal identifiers are removed from the information you give us. A limited number of study personnel have access to your information. There are several steps that need to be done to link the names and the ID's to your personal information. No data are ever stored on laptops and only authorized individuals have access to the data. The study has received a Certificate of Confidentiality, a document which will help us protect the privacy of our research subjects. The Certificate protects against the involuntary release of information about subjects collected during the course of our covered studies. The researchers involved in the studies cannot be forced to disclose the identity or any information collected in the study in any legal proceedings at the federal, state, or local level, regardless of whether they are criminal, administrative, or legislative proceedings. Federal funding agencies may review our records under limited circumstances, such as a DHHS request for information for an audit or program evaluation or an FDA request under the Food, Drug and Cosmetics Act.
Why do you need to know my income? Many people in the LTFU are hesitant to provide answers to questions regarding income and wonder what income has to do with their past history of childhood cancer. First, be assured, the information you provide is held in strict confidence. When results of various analyses are presented, the data is grouped. A report, for example, might say that 10% of the LTFU population has a household income of less than $10,000, not that John Smith earns less than $10,000. The information is useful in identifying some of the financial burdens some survivors experience which might impact of their ability to get health care services.
How is this study supposed to help me? The direct benefits of participating in the LTFU may be limited. But, there are several indirect benefits. First, you are partners with the researchers in describing late effects in the largest epidemiologic investigation of survivors of childhood cancer. The information you provide contributes to our understanding of the health needs of survivors that previously may have gone unrecognized. You have a chance to take part in additional studies designed to learn more about the effects of changing behaviors to promote a healthier lifestyle and reduce the risk of disease. The experiences you describe in health surveys help improve the treatment and outcome for future children diagnosed with cancer or other serious illness. Finally, participants also receive newsletters designed to educate survivors about the potential impacts of a cancer diagnosis and treatment on their health and present resources that specifically address survivor needs.
My brother/sister had cancer, I didn't. Why am I still part of the study? Many siblings are confused about why they are participants in a study of the late effects of childhood cancer survivors. If investigators were interested in determining if there is a higher risk of a second cancer among childhood cancer survivors, they would need to compare that number to another group that is similar but without a past history of childhood cancer or exposure to chemotherapy or radiation therapy. Siblings of childhood cancer survivors are that comparison group. They shared many of the same environmental exposures as their sibling with cancer with the exception of chemotherapy and radiation. Continued sibling participation is very valuable.
If you have more questions about your participation in the LTFU, we want to help answer them. Please call 1-800-775-2167.
