RecruitingOBSERVATIONAL

Longitudinal Study for Central Nervous System Vasculitis

This study is looking into a rare but serious condition called Primary Central Nervous System Vasculitis (CNSV). This is a type of inflammation that affects the blood vessels in the brain and spinal cord, which can lead to problems like strokes or issues with memory and speech. Little is currently known about CNSV because it's so rare. This research is building a group of patients to closely follow over several years. The main goal is to gain a deeper understanding of how the disease develops, how different treatments work, and how it affects patients' lives. By collecting information from many people, researchers hope to improve diagnosis and care for CNSV.

At a glance

Status

Recruiting

Sponsor

University of Pennsylvania

Enrolment target

Start

01 Mar 2023

Estimated completion

31 Dec 2030

Central Nervous System Vasculitis CNS Vasculitis CNSV Vasculitis

What is this study about?

You might have heard of this study if you or someone you know has a rare condition called Primary Central Nervous System Vasculitis (CNSV). This is a serious illness where the blood vessels in the brain and spinal cord become inflamed. This inflammation can sometimes lead to problems like strokes, difficulties with thinking or speaking, changes in eyesight, or even memory loss. Because CNSV is quite rare, it has been challenging for doctors and researchers to learn everything they need to know about it. The more we understand, the better we can help people living with this condition.

This study is creating a special group of patients that researchers can follow closely over time. Think of it like a long-term project aimed at piecing together a clearer picture of CNSV. They want to understand why it happens, how it affects different people, and how various treatments impact the disease. By gathering detailed information from many patients, they hope to get a much better idea of how the condition progresses naturally, what causes it at a deeper level, and even find new ways to measure how active the disease is or predict how it might develop.

Ultimately, the goal of this ongoing research is to improve how CNSV is diagnosed and treated in the future. By bringing together information from many individuals, researchers hope to uncover important clues that could lead to better medicines and improved care, helping patients live healthier lives.

Key takeaways

The study focuses on Primary Central Nervous System Vasculitis (CNSV).
It aims to understand this rare brain condition better over time.
Participation involves regular clinic visits, blood tests, and questionnaires.
The study duration is approximately three years.
Participation helps future patients by improving knowledge and potential treatments.

Who may be eligible?

To join this study, adults must be at least 18 years old and have a diagnosis of Primary Central Nervous System Vasculitis (CNSV). This diagnosis needs to meet specific criteria established by experts.

These criteria include having unexpected brain or nerve problems that can't be explained by other conditions. Also, there must be clear signs of blood vessel inflammation in the brain or spinal cord, either from scans or tissue samples. Importantly, there should be no evidence that the inflammation is affecting other parts of your body, and no other condition should be causing these blood vessel changes.

If you meet these requirements and are willing to give your informed consent to participate, you might be eligible. Anyone who is not willing to sign the consent form cannot take part in the study.

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?
Have you been diagnosed with Primary Central Nervous System Vasculitis (CNSV)?
Does your diagnosis involve unexpected brain/nerve problems and signs of blood vessel inflammation in the brain?
Is there no evidence of inflammation in other body parts or other conditions causing these symptoms?
Are you willing to sign a consent form to participate?

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, you would visit the study team regularly. For the first year, these visits would happen every three months. After that, you would have one visit each year for an additional two years, making it a total of three years of participation. At every visit, you would have a physical check-up, and the study team would ask about your medical history and any medications you are taking.

You would also be asked to provide blood samples at each visit. Additionally, you would complete several questionnaires. These surveys help the researchers understand how your disease is affecting you, your general health, and information about your use of tobacco, alcohol, or other substances. The study aims to follow you over three years to gather important information about your condition.

Potential risks and benefits

Taking part in any medical study has both potential benefits and potential risks. A main benefit of this study is helping researchers learn more about your rare condition, CNS vasculitis, which could lead to better understanding and treatments for future patients. You might also receive closer monitoring of your health during the study. Potential risks could include the discomfort of regular blood draws, and the time commitment for visits and questionnaires. You are always free to change your mind and withdraw from the study at any time, for any reason, without it affecting your medical care.

Locations (6)

Mayo Clinic
Verified postcode
Rochester, United States· Recruiting
Cleveland Clinic
Verified postcode
Cleveland, United States· Recruiting
University of Pennsylvania
Verified postcode
Philadelphia, United States· Recruiting
Vanderbilt University
Verified postcode
Nashville, United States· Recruiting
St. Joseph's Healthcare
Verified postcode
Hamilton, Canada· Recruiting
University of Toronto/Sinai Health
Verified postcode
Toronto, Canada· Recruiting

Common questions

What is CNS vasculitis?

It's a rare condition where blood vessels in the brain and spinal cord become inflamed, which can cause various neurological problems.

Why is this study important?

Because CNS vasculitis is rare, little is known about it. This study aims to gather more information to improve diagnosis and treatment.

How long will I be in the study?

You would be part of the study for three years, with visits every three months in the first year, and then once a year for the next two years.

What kind of tests will I have?

You'll have physical exams, give blood samples, and fill out questionnaires at each visit.

Can I stop participating if I want to?

Yes, you have the right to leave the study at any time without it affecting your regular medical care.

How to find out more

Carol McAlear

cmcalear@upenn.edu 7813214567 Official trial record

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