RecruitingOBSERVATIONAL

Institut Paoli Calmettes Chronic Lymphatic Leukemia Database

This study is creating a secure database to collect important health information from adults in France who have been diagnosed with chronic lymphocytic leukaemia, often called CLL. CLL is a slow-growing cancer that affects white blood cells. By gathering details about many patients, researchers at the Institut Paoli-Calmettes hope to better understand CLL, how it progresses, and eventually improve care. This isn't a study testing new treatments; instead, it's about systematically collecting existing medical information to build a valuable resource for future research. If you have CLL and are being treated at Institut Paoli-Calmettes, your information might be included to help others.

At a glance

Status

Recruiting

Sponsor

Institut Paoli-Calmettes

Enrolment target

4,200

Start

01 Jan 2006

Estimated completion

01 Dec 2030

Leukemia, Lymphocytic, Chronic, B-Cell

What is this study about?

This study is all about collecting information from people who have a type of blood cancer called chronic lymphocytic leukaemia, or CLL. Imagine a very organised filing system where doctors can safely store important details about patients with CLL. That's essentially what this database is.

The researchers at the Institut Paoli-Calmettes in France are building this database to get a clearer picture of CLL. By looking at information from many different patients over time, they can learn more about how the condition affects people, how it might change, and what factors are important in its journey. This kind of information is really valuable because it helps doctors and scientists understand diseases better, which can lead to improvements in diagnosis and care in the future.

It's important to know that this study isn't testing new medicines or treatments. Instead, it's about gathering existing medical information that has already been collected as part of your regular care. Think of it as putting together many pieces of a puzzle to see the whole picture of CLL more clearly. This shared knowledge can then benefit many other people living with CLL.

Key takeaways

This is a study collecting health information about chronic lymphocytic leukaemia (CLL).
It aims to build a database to learn more about the condition.
No new treatments or hospital visits are involved.
Your private information will be protected.
You can decide if you want your information included, or change your mind later.

Who may be eligible?

To be included in this database, you must have received a diagnosis of chronic lymphocytic leukaemia (CLL).

There is one main reason why someone might not be included: if their 'Matutes score' is less than 4. The Matutes score is a way doctors classify CLL, and a score below 4 usually means your condition doesn't fit the typical criteria for the kind of CLL this database is focusing on.

Participants must be adults, aged between 18 and 95 years old. Gender does not affect whether you can be included in this database.

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.

Do you have a diagnosis of chronic lymphocytic leukaemia (CLL)?
Are you currently receiving care at Institut Paoli-Calmettes in France?
Are you between 18 and 95 years old?
Is your doctor's classification of your CLL (Matutes score) 4 or higher?

Answer every question to see your result.

What does participation involve?

If your information is included in this database, it's important to understand that you won't need to do anything extra. This study is collecting information that is already part of your medical records from your diagnosis and ongoing care at Institut Paoli-Calmettes. You won't have any additional hospital visits, extra assessments, or be given new medication because of this database. Your usual care for CLL will continue as normal. The researchers will simply access and record relevant details from your existing medical history securely.

Potential risks and benefits

The main benefit of your information being included is that it helps doctors and researchers learn more about CLL, which could lead to better understanding and care for patients in the future. As this study only involves collecting existing medical information, there are no physical risks involved like there might be with a new treatment. The main risk is a small chance of your personal data not remaining private, but strict measures are taken to protect your information and keep it anonymous where possible. You always have the right to ask for your information to be removed from the database at any time without affecting your medical care.

Locations (1)

Institut Paoli-Calmettes
Verified postcode
Marseille, France· Recruiting

Common questions

What is chronic lymphocytic leukaemia (CLL)?

CLL is a type of slow-growing cancer that affects the white blood cells, specifically a type called lymphocytes. These cells are part of your immune system.

Will I have to take new medicines?

No, this study is only about collecting information from your existing medical records; you won't be given any new treatments or medicines because of it.

How will my personal information be kept safe?

Researchers use strict rules and secure systems to protect your privacy and keep your medical information confidential and anonymous where possible.

Do I need to do anything if my information is included?

No, you don't need to do anything. The researchers will collect the information from your existing medical records at Institut Paoli-Calmettes.

Can I decide not to have my information included?

Yes, you always have the right to say no or to withdraw your consent for your data to be used at any time, and it will not affect your medical care.

How to find out more

Dominique Genre, MD

drci.up@ipc.unicancer.fr 0033491223778 Official trial record

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