RecruitingNAINTERVENTIONAL

Predictive Factors of Autonomy Loss in Real-life Cohort

This study is gathering information from people in France who have memory problems, like those caused by Alzheimer's disease. Memory disorders can make it hard to think clearly, do daily activities, and sometimes change a person's behaviour. Since there isn't a cure yet, doctors want to understand what makes these conditions worse. The main goal is to find out what factors might predict when someone's ability to live independently changes. They will do this by regularly checking on about 5,400 patients over many years. This information will help healthcare professionals better support people with memory disorders in the future.

At a glance

Status

Recruiting

Phase

Sponsor

Hospices Civils de Lyon

Enrolment target

5,400

Start

09 Sep 2020

Estimated completion

01 Mar 2032

Memory Disorders

What is this study about?

Memory problems, such as those seen in conditions like Alzheimer's disease, can be very challenging. They can make it difficult to remember things, manage daily tasks like getting dressed or cooking, and sometimes even change how a person acts. Because there isn't a cure for these conditions right now, understanding what makes them progress is incredibly important for improving care.

This study aims to discover what factors might predict changes in a person's ability to live independently. Imagine trying to figure out which pieces of a puzzle are most important in making a picture complete – this study is like that, but for memory problems. Researchers are building a large and secure database using real health records from memory clinics in a specific region of France. They will collect this information over many years.

The main purpose is to see how different things in a person's health record might link to changes in their ability to do day-to-day activities. They will check in with patients every 6 to 12 months to see how they are doing. By following a large group of people (around 5,400 patients) for up to 10 years, the researchers hope to gain valuable insights that could lead to better ways to help people with memory challenges in the future.

Key takeaways

This study looks at health information from people with memory problems.
It aims to understand what factors lead to changes in daily independence.
No new treatments or tests are involved; it uses existing medical records.
Your participation helps improve future care for memory disorders.
Your information can be included for up to 10 years.
You can withdraw your consent at any time.

Who may be eligible?

To be part of this study, you need to be at least 18 years old and regularly visit a memory clinic or a special neuro-cognition service for your health. You should also be living at home or in certain types of care housing – not in a hospital or long-term care facility.

Critically, you must have some level of memory problem, whether it's mild or more advanced. The study wants to understand how memory conditions affect people at every stage.

However, you can't join if you're in a hospital or institution, or if someone else has legal guardianship over your decisions. Also, if you have severe hearing or vision problems that would make it impossible for you to take part in the assessments, then this study wouldn't be suitable for you.

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.

Are you 18 years old or older?
Do you currently visit a memory clinic or specialist for memory issues?
Are you living at home or in certain care housing (not an institution)?
Have you been diagnosed with any type of memory problem?
Can you understand and take part in health assessments without severe sight or hearing issues?
Are you able to make your own medical decisions (not under legal protection)?

Answer every question to see your result.

What does participation involve?

As this is a study looking at information already being collected during your regular medical appointments, it doesn't involve any extra visits or new tests specifically for the study. You won't be given any new medications or treatments as part of this research, as it's purely observational. The researchers will simply gather details from your existing medical records over time.

Your involvement would mean that information from your routine check-ups and health records will be included in the study's database. This will happen every 6 to 12 months when you have your regular appointments. The total time your information might be followed in the study could be up to 10 years, with the entire study lasting 13 years.

Potential risks and benefits

There are no direct medical benefits or risks to you for taking part, as this study simply uses information from your regular medical care and doesn't involve any new treatments or procedures. Your personal information will be kept confidential and protected, but there's always a very tiny risk of data breaches in any study. The main benefit is that your information will help doctors and researchers better understand memory disorders, potentially leading to improved care for others in the future. You always have the right to withdraw your information from the study at any time, without it affecting your medical care.

Locations (5)

Hôpital Dugoujon
Verified postcode
Caluire-et-Cuire, France· Recruiting
Centre Hospitalier Lyon Sud
Verified postcode
Lyon, France· Recruiting
Service de neuro-cognition et neuro-ophtalmologie du Groupement Hospitalier Est
Verified postcode
Lyon, France· Recruiting
CHU Saint-Etienne
Verified postcode
Saint-Etienne, France· Recruiting
Centre Mémoire de Ressources et de Recherche de Lyon
Verified postcode
Villeurbanne, France· Recruiting

Common questions

What is a 'memory disorder'?

A memory disorder means you have problems remembering things or thinking clearly, which can affect daily life. Alzheimer's disease is one common type.

Will I take any new medicines in this study?

No, this study doesn't involve giving you any new medicines or treatments. It just looks at information from your regular healthcare.

How often will my information be checked?

The study will gather information from your medical records about every 6 to 12 months, usually when you have your routine check-ups.

How long will this study last for me?

Your medical information could be included in the study for up to 10 years.

Can I leave the study if I change my mind?

Yes, you can decide to have your information removed from the study at any time without it affecting your usual medical care.

How to find out more

Pierre Krolak-Salmon, PhD

pierre.krolak-salmon@chu-lyon.fr 04 72 43 20 50 Official trial record

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