RecruitingOBSERVATIONAL

ID Of Prognostic Factors In Mycosis Fungoides/Sezary Syndrome

This study focuses on Mycosis Fungoides (MF) and Sezary Syndrome (SS), which are specific types of Non-Hodgkin's Lymphoma that primarily affect the skin. Researchers want to gather information from patients with these conditions to create a tool that helps predict how the disease might progress. By understanding which patients might be at higher or lower risk for certain outcomes, doctors can improve the way they plan and deliver care. The goal is to collect detailed and consistent information from many different hospitals to build a more accurate picture, ultimately leading to better support and treatment strategies for people living with these rare conditions.

At a glance

Status

Recruiting

Sponsor

Stanford University

Enrolment target

2,000

Start

01 Oct 2016

Estimated completion

01 Mar 2027

Mycosis Fungoides Non-Hodgkin's Lymphoma

What is this study about?

This study is looking into two rare types of lymphoma that mainly affect the skin: Mycosis Fungoides (MF) and Sezary Syndrome (SS). These conditions are types of Non-Hodgkin's Lymphoma. The main idea behind this research is to get a better understanding of how these diseases behave in different people.

To do this, doctors and researchers at various hospitals will collect information from patients with these conditions. They want to look at lots of different factors – things like specific symptoms, how quickly the disease has changed, and how it responds to initial treatments. By gathering this consistent information from many patients, they hope to find patterns.

The ultimate goal is to create a kind of prediction tool. This tool would help doctors identify early on whether a patient might have a more aggressive form of the disease or a milder one. Knowing this could help doctors tailor treatments more effectively and improve the personal care plan for each patient. It’s all about working towards better ways to manage and treat MF and SS.

Key takeaways

A research study focused on understanding Mycosis Fungoides (MF) and Sezary Syndrome (SS).
Aims to identify factors that predict how the conditions might progress.
Data collection from existing medical records to improve future patient care.
Not a treatment study; no new medications or procedures involved.
Information gathered will be kept private and confidential.

Who may be eligible?

To be part of this study, you would need to have been diagnosed with a more advanced stage of Mycosis Fungoides or Sezary Syndrome (Stages IIB through IVB). This diagnosis must have been made within the last six months before you first came to the hospital taking part in the study.

It's also important that you plan to continue receiving your care at the hospital involved in the study, or that the doctors can easily keep track of your health if you're also seeing another doctor. This ensures they can collect all the necessary information about your health over time.

You would not be able to join if you were diagnosed with an earlier stage of MF or SS (Stages IA-IIA) and your disease later became more advanced. Also, if your advanced diagnosis was made more than six months before you first visited the participating hospital, you wouldn't qualify. Finally, this study isn't for people who are just coming for a single visit and won't be continuing their care at the study hospital.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Have I been diagnosed with advanced Mycosis Fungoides (MF) or Sezary Syndrome (SS)?
Was my advanced diagnosis made within the last 6 months before my first visit to the study hospital?
Do I plan to receive my ongoing care at the hospital involved in the study?
Have I NOT been diagnosed with an early stage MF/SS that later became advanced?

Answer every question to see your result.

What does participation involve?

As this study is about collecting information for research, you wouldn't be asked to take any new medication or have any extra medical procedures. Your participation would mainly involve allowing the research team to collect information from your existing medical records, such as your diagnosis, symptoms, and how you are responding to your usual care. This information would be collected during your regular hospital visits for managing your condition.

Potential risks and benefits

This study primarily involves collecting medical information, so there are no direct physical risks from participating. Your personal information will be kept private. The main benefit is that the information gathered from your experience, combined with many others, could help future patients by improving our understanding of Mycosis Fungoides and Sezary Syndrome. This might lead to better ways to identify individual risks and tailor treatments, although you won't personally receive new treatments or immediate benefits from this specific study. You are always free to decide to withdraw from the study at any time without affecting your medical care.

Locations (13)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

City of Hope
Verified postcode
Duarte, United States· Recruiting
Stanford University, School of Medicine
Verified postcode
Palo Alto, United States· Recruiting
University of Iowa
Verified postcode
Iowa City, United States· Recruiting
Hackensack University Medical Center
Verified postcode
Hackensack, United States· Recruiting
University of Pittsburg
Verified postcode
Pittsburgh, United States· Recruiting
University of Texas Southwestern
Verified postcode
Dallas, United States· Recruiting
University of Utah Hospital
Verified postcode
Salt Lake City, United States· Recruiting
Hospital Italiano de Buenos Aires
Verified postcode
Buenos Aires, Argentina· Recruiting
Peter MacCallum Cancer Center,
Verified postcode
Melbourne, Australia· Recruiting
University of Sao Paulo Medical School
Verified postcode
São Paulo, Brazil· Recruiting
Peking University First Hospital
Verified postcode
Beijing, China· Recruiting
The University of Tokyo
Verified postcode
Tokyo, Japan· Recruiting

Common questions

What are Mycosis Fungoides (MF) and Sezary Syndrome (SS)?

They are rare types of lymphoma, a form of cancer that usually starts in white blood cells. These specific types mainly affect the skin.

What is the main goal of this study?

The study aims to understand what factors can predict how MF/SS might progress in different people, which can help doctors provide more personalised care.

Will I receive new treatments if I join this study?

No, this study is about gathering information from existing medical records and your regular care, not testing new treatments or medications.

Will my personal health information be kept private?

Yes, all your personal information collected for the study will be handled with strict privacy and kept confidential.

How does this study help patients?

By identifying patterns, researchers hope to create a tool that helps doctors better understand individual risks in MF/SS, potentially leading to improved care for future patients.

How to find out more

Tatiana Neal

tatianan@stanford.edu 650-709-7838 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.