RecruitingOBSERVATIONAL

INSIGHT (Insight Into Nephrotic Syndrome)

The INSIGHT study is an important research project focusing on nephrotic syndrome, a kidney condition affecting children. Researchers are following children aged 6 months to 18 years over time to learn more about this condition. They aim to discover what genetic factors (things passed down in families) and environmental factors (things around us) might lead to children developing nephrotic syndrome. They also want to understand why the condition progresses differently in various children. This study will help doctors better understand, and potentially treat, nephrotic syndrome in the future. Participation involves children sharing information and completing questionnaires.

At a glance

Status

Recruiting

Sponsor

The Hospital for Sick Children

Enrolment target

1,000

Start

01 Jan 2011

Estimated completion

01 Jan 2032

Nephrotic Syndrome

What is this study about?

The INSIGHT study, which stands for "Insight Into Nephrotic Syndrome," is a research project designed to help us understand a kidney condition called nephrotic syndrome in children. When someone has nephrotic syndrome, their kidneys leak important proteins from their blood into their urine, which can cause swelling and other problems.

Researchers leading the INSIGHT study are observing children over a period of time to learn more about what might cause nephrotic syndrome and how it develops. They're particularly interested in looking at a mix of factors, including genetics (what's in a child's genes, passed down from parents), and environmental factors (things in a child's surroundings and lifestyle). By studying a large group of children from different backgrounds, they hope to get a clearer picture of why some children get this condition and why it might get worse for some over time.

The main goal of this study is to gather information that will eventually help doctors improve how they understand and care for children with nephrotic syndrome. While the study starts with participants mainly from Toronto, Canada, and nearby areas, it plans to include more locations in the future to gather an even wider range of information.

Key takeaways

The INSIGHT study aims to understand what causes childhood nephrotic syndrome and how it progresses.
It's an observational study, meaning researchers will watch and collect information, not give new treatments.
Children aged 6 months to 18 years with nephrotic syndrome might be eligible.
Participation involves sharing information, completing questionnaires, and regular follow-up.
The study helps improve future understanding and care for children with this kidney condition.

Who may be eligible?

To be part of the INSIGHT study, children need to have received a diagnosis of nephrotic syndrome. They also need to be aged between 6 months and 18 years old. Both the child (if old enough) and their parent or guardian will need to agree to take part by signing a consent form.

There are some reasons why a child might not be able to join. For example, if they were born with nephrotic syndrome (diagnosed before 1 year of age), or if they have other medical conditions that affect many parts of their body. Children with certain other diseases, like systemic lupus erythematosus, would also not be able to participate. Also, if parents or guardians are unable to provide consent for their child, the child cannot join.

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.

Does your child have a diagnosis of nephrotic syndrome?
Is your child between 6 months and 18 years old?
Are you able to provide consent for your child?
Does your child have other complex medical conditions involving multiple organs?
Was your child diagnosed with nephrotic syndrome before they were 1 year old (congenital)?
Does your child have conditions like systemic lupus erythematosus?

Answer every question to see your result.

What does participation involve?

If your child takes part in the INSIGHT study, it means they will be observed by researchers over a period of time. This will involve regular visits where information will be collected. Your child will also be asked to complete questionnaires, which are forms with questions designed to gather details about their health and lifestyle. The researchers will be looking at things like genetic make-up (from blood or saliva samples, for example) and other biological markers (found in samples like blood or urine). They will also look at environmental factors. The total duration of participation isn't specified, but as a "longitudinal" study, it means they will follow participants for an extended period.

Potential risks and benefits

Taking part in this study could help doctors and researchers learn more about nephrotic syndrome, which could lead to better understanding and care for children with the condition in the future. While directly benefiting your child medically isn't the primary goal, their involvement contributes significantly to medical knowledge. There are usually minimal risks associated with observational studies like INSIGHT, mainly involving the time commitment for visits and potentially some discomfort from giving samples, if required. You and your child have the right to withdraw from the study at any time without having to give a reason, and this will not affect your child's medical care.

Locations (4)

William Osler Health System, Brampton Civic Hospital and Peel Memorial Centre for Integrated Health and Wellness
Verified postcode
Brampton, Canada· Recruiting
Hamilton Health Sciences Corporation - McMaster University Medical Centre
Verified postcode
Hamilton, Canada· Recruiting
Rouge Valley Health System, Rouge Valley Centenary
Verified postcode
Scarborough Village, Canada· Recruiting
The Hospital for Sick Children
Verified postcode
Toronto, Canada· Recruiting

Common questions

What is nephrotic syndrome?

Nephrotic syndrome is a kidney condition where the kidneys leak too much protein from the blood into the urine, which can cause swelling in parts of the body.

What kind of information will the study collect?

The study will collect information about your child's health, their genes, and environmental factors through questionnaires and potentially samples like blood or urine.

Will my child receive new medicine in this study?

No, this is an observational study, which means researchers are watching and collecting information, not giving out new medicines or treatments as part of the study.

How long will my child need to be in the study?

The study is 'longitudinal,' meaning participants are followed over a period, but the exact duration for each child isn't specified in the summary provided. It can last several years.

Can my child stop participating at any time?

Yes, you and your child have the right to withdraw from the study at any point without it affecting their medical care.

How to find out more

Rulan Parekh, MD

rulan.parekh@sickkids.ca 416-813-7654 Official trial record

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