…About the study.
What does LEO stand for?
LEO stands for Lymphoma Epidemiology of Outcomes.
LEO is an Epidemiological Study. What does that mean, and what is the difference between this and a Clinical Trial?
The LEO Study is an epidemiological study. This means that we do not assign any therapy or interventions for your lymphoma, but rather track (through surveys and medical records) the care you receive (as part of usual clinical practice) and the outcomes you experience. This is in contrast to a therapeutic clinical trial, where a participant is given some type of intervention that is decided by the study. For example, some trials randomize participants to one treatment or another in order for doctors to identify which treatment is best for a specific type of cancer. Other trials select a specific new treatment in development for all participants. Both types of studies are important for medical progress. Some LEO participant also participate in clinical trials. An epidemiological study is able to study many more types of questions than a clinical trial, but a clinical trial provides a stronger answer related to a new treatment.
What is Epidemiology?
Epidemiology is a branch of medicine that deals with identifying the causes and outcomes of diseases in populations. This knowledge is used find ways to prevent disease onset, maintain health, and improve the outcomes of patients who already have a disease.
What is the Goal of LEO?
The goal of LEO is to support a broad research agenda aimed at identifying new clinical, epidemiologic, genetic, tumor, and treatment factors influence patient outcomes in order to improve the length and quality of life of people living with NHL To achieve this goal, we study a diverse group of NHL patients, collect and bank blood and tissue specimens, collect detailed clinical and risk factor data from participants at enrollment and over time, and follow patients over time to determine their outcomes and quality of life.
Who is the research team?
The LEO research team consists of investigators, clinicians, study coordinators, lab technicians, pathologists, epidemiologists, statisticians, patient advocates and students who all work together to collect, store, and analyze data and specimens. All 8 centers’ research teams work closely together to assure the continued success of this cohort. Researchers from around the world are encouraged to collaborate with the LEO cohort team.
How long is the study?
There is no end date for this study. Please know that you are able to leave this study at any point by contacting the study team at your medical facility.
…ABOUT YOUR PARTICIPATION.
How will the LEO study benefit me?
While there is no direct benefit to you for participating in LEO, the information you provide will help us gain a better understanding of lymphoma. Our goal is to have the information that you provide help us find ways to improve patient care and quality of life of individuals diagnosed with lymphoma in the future.
If I get my care from another hospital can I still participate?
Yes! There are many patients that are a part of the registry who do not return consistently to their LEO center for care. We have follow-up forms and other practices in place to support your continued participation in the study. Completion of follow-up forms not only strengthens our study, but also allows us to keep in contact with you if your care is done at an outside hospital or clinic. We also have each participant sign a form to authorize the release of medical information from the outside clinic or hospital to the LEO center. This information collected is critical to the research we are conducting.
Will participating in LEO affect my cancer treatment?
No. Participation in the LEO study will not impact your cancer treatment or affect your medical care in any way.
Why should I continue to fill out the questionnaires even after I’ve achieved remission?
It is extremely important to our study! We try to follow patients over their lifetime and no evidence of disease is just as valuable information as those that have reported relapses or new treatments.
Your questionnaire will be mailed or emailed based on the preferences you set upon consenting to our study. Need to change your contact information? Let us know by contacting us by email at firstname.lastname@example.org.
What does the email questionnaire look like?
The questionnaire link will be sent to you from:
LEO (Lymphoma Epidemiology of Outcomes) Follow-up Survey [mailto:email@example.com]
The body of the email is shown below. Please do not copy the URL from the example below- your email will have a unique URL to click for the survey.