Lorraine Registry of Multiple Sclerosis
The RelSEP is a special study in the Lorraine region of France that keeps track of everyone newly diagnosed with Multiple Sclerosis (MS). It's like a detailed health diary that follows people over many years. The main goal is to understand how MS develops, which treatments are used, and how effective they are. Researchers regularly collect information from medical records and other sources, making sure to avoid duplicates. This helps them get a complete picture of MS in the region, leading to better understanding and potentially improved care for people with MS. The study also looks at factors that might influence how MS progresses.
Em resumo
Sobre o que é este estudo?
This study, called the Lorraine Registry of Multiple Sclerosis (or RelSEP for short), is like a long-term health monitoring programme for people with MS in a region of France called Lorraine. When someone in Lorraine is newly diagnosed with MS, their information can be added to this registry. The study then carefully follows their health journey for many years.
The main idea is to gather as much detail as possible about MS. This includes information about when symptoms started, how the condition changes over time, what treatments are used, and how effective those treatments are. Researchers also look at things like results from scans (MRI) and other tests, as well as any side effects from medicines. By collecting all this information in one place, researchers can build a very clear picture of MS and how it affects people.
This kind of detailed information is really important because it helps scientists and doctors learn more about MS. They can use this information for studies that look at why MS progresses differently in some people, or which treatments work best. Ultimately, the goal is to improve our understanding of MS, which can lead to better care and support for those living with the condition.
Pontos principais
- This study collects information from people newly diagnosed with MS in Lorraine, France.
- It helps researchers understand how MS progresses and how treatments work over time.
- Participation involves allowing researchers to access your existing medical records.
- There are no special hospital visits or new treatments involved.
- Your personal information is kept confidential.
- You can choose to withdraw from the registry at any time.
Quem pode ser elegível?
To be included in this study, you need to meet a couple of straightforward requirements.
First, you must have been officially diagnosed with Multiple Sclerosis (MS) by a doctor. This means a neurologist has confirmed your condition.
Secondly, you must live in the Lorraine region of France. If you meet these two simple criteria, you may be considered for the registry. However, if you prefer not to be part of the registry, you can certainly say no.
Este estudo pode ser adequado para você?
Responda a estas perguntas rápidas para ver se você pode ser elegível. Este é apenas um guia — a decisão final é da equipe de pesquisa.
- Have I been officially diagnosed with Multiple Sclerosis?
- Do I currently live in the Lorraine region of France for most of the year?
- Am I happy for my medical information related to MS to be used for research (anonymously)?
- Am I comfortable with my information being followed over a long period?
O que envolve a participação?
If you are part of this registry, it's mainly about allowing researchers to collect information about your health and MS journey. This isn't a study where you'd visit a clinic regularly for extra appointments or take new, unapproved medicines.
Instead, the researchers will gather information from your existing medical records. This includes details from your neurologist, hospital visits, and even information from health insurance. They will look at things like your diagnosis date, your symptoms, results from any MRI scans or other tests you've had, and details about your MS treatments, including any changes or side effects.
Your participation involves allowing this ongoing collection of information, which happens at least every two years. The study aims to follow people for a very long time, so there isn't a specific end date for your involvement, but your consent to be registered can be withdrawn at any time.
Riscos e benefícios potenciais
Localizações (1)
- CIC 1433 Épidémiologie clinique, Inserm, Université de Lorraine, CHRU de NancyCódigo postal verificadoNancy, França· Recrutamento
Perguntas frequentes
What is a 'registry'?
A registry is like a confidential database that collects health information from a group of people with a specific condition, in this case, MS. It helps researchers track the condition over time.
Will my doctors change my treatment because of this study?
No, this study does not change your medical care or treatment. Your doctors will continue to treat you as usual based on your current health needs.
How often will my information be checked?
The information in the registry will be updated and followed up on at least every two years, and often more frequently from various sources.
As minhas informações pessoais são mantidas privadas?
Yes, great care is taken to ensure your personal details are kept private. The information used for research is usually anonymised, meaning your name and direct identifiers are removed.
Posso sair do estudo se mudar de ideia?
Yes, you can decide to no longer be part of the registry at any time without it affecting your medical care.
Como saber mais
Francis Guillemin, MD, PHD
Sempre consulte seu médico ou especialista antes de decidir participar de um estudo.
Interessado em participar?
Discussão
Discussão da comunidade
Desenvolvido pelo nosso fórum em community.patient.info. Por favor, seja respeitoso — isto não é um conselho médico.