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Neurodevelopmental Disorder Diagnosis During Adulthood

This study focuses on understanding neurodevelopmental disorders like ADHD, dyslexia, and autism when they are diagnosed in adulthood. Many people live with these conditions for years without knowing, which can cause problems in school or at work. This research aims to gather detailed information from adults (aged 18-55) who have recently received such a diagnosis. The goal is to improve how these conditions are identified and managed throughout a person's life, creating better support systems and care pathways. Currently, there isn't much information on adults diagnosed later, so this study is important for improving scientific understanding and helping more people get the right care.

At a glance

Status
Recruiting
Sponsor
Hospices Civils de Lyon
Enrolment target
300
Start
08 Jan 2024
Estimated completion
01 Dec 2024

What is this study about?

Many conditions that affect how people learn, think, and interact with the world, like ADHD, dyslexia, or autism, often start in childhood. However, quite a lot of people don't get a diagnosis until they are adults. This can mean they struggle for many years without understanding why, which might affect their schooling, friendships, or jobs.

This research project is trying to understand more about adults who receive a diagnosis for these neurodevelopmental conditions later in life, specifically between the ages of 18 and 55. The researchers want to collect detailed information from these individuals to learn more about their experiences and what kind of support they need. Currently, there isn't a clear system in place to help adults get diagnosed and supported properly for these conditions.

The main aim is to develop a better process for identifying and helping adults with these disorders. By gathering this new information, the study hopes to create more organised and effective care plans, from getting a diagnosis to finding appropriate support and integration into work and social life. This research is important because it will fill a big gap in our knowledge and ultimately help many adults who have been living with undiagnosed neurodevelopmental conditions.

Key takeaways

  • The study focuses on adults (18-55) getting a neurodevelopmental disorder diagnosis later in life.
  • It aims to improve how these conditions are identified and supported in adulthood.
  • Many adults struggle with these conditions undiagnosed, affecting education and work.
  • The research will gather significant data to create better lifelong care plans.
  • This study is crucial for advancing scientific understanding in this under-researched area.

Who may be eligible?

To be part of this study, you need to be an adult between 18 and 55 years old. You must have received a diagnosis of a neurodevelopmental disorder (like ADHD, dyslexia, or autism) after you turned 18. It's important that you can see, hear, and understand spoken and written French well enough to take part in the assessments.

There are a few reasons why someone might not be able to join. For example, if you have an intellectual disability, or if you are dealing with serious addiction problems or significant mental health conditions at the same time, this study might not 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.

  1. Are you between 18 and 55 years old?
  2. Have you been diagnosed with a neurodevelopmental disorder (like ADHD or autism) after you turned 18?
  3. Can you see, hear, and understand French well enough for clinical assessments?
  4. Do you not have an intellectual disability?
  5. Are you not currently dealing with serious addiction or significant psychiatric conditions?
Answer every question to see your result.

What does participation involve?

The information provided does not detail what taking part in the study would specifically involve. However, it mentions that the project aims to collect "comprehensive, homogeneous data" from patients and will involve "clinical and neuropsychological evaluation." This suggests that if you were to participate, you would likely undergo various tests and assessments designed to understand your condition and experiences in detail. The study focuses on gaining a better understanding of neurodevelopmental disorders diagnosed in adulthood and developing a "lifelong care diagnostic pathway." The total duration of your participation, the number of visits, or whether any medication or follow-up is involved is not specified in the provided information.

Potential risks and benefits

Potential benefits of participating are that you would be contributing valuable information to help improve diagnosis and support for other adults with neurodevelopmental disorders. This research aims to create better care pathways. The risks aren't explicitly stated but could involve the time commitment for assessments or the emotional impact of discussing your diagnosis and struggles. You always have the right to withdraw from the study at any time without giving a reason, and it will not affect your medical care.

Locations (1)

  • Hospices Civils de Lyon
    Verified postcode
    Bron, France· Recruiting

Common questions

What is a neurodevelopmental disorder?

These are conditions that affect how your brain develops, which can impact things like learning, attention, communication, and social skills. Examples include ADHD, dyslexia, and autism.

Why is this study only for adults diagnosed later in life?

Many adults receive these diagnoses later, and there's a big gap in understanding how best to support them. This study aims to fill that gap.

What does 'clinical and neuropsychological evaluation' mean?

This refers to tests and assessments performed by medical and brain specialists to understand your condition and how it affects your thinking and behaviour.

Will I receive treatment if I join this study?

The information provided suggests the study is about collecting data to improve care pathways, not directly providing treatment. You would need to clarify this with the study team.

Is support available if I find answering questions about my condition difficult?

The study details don't mention specific support, but it's important to ask the research team about emotional support or breaks during assessments if you're concerned.

How to find out more

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

Interested in taking part?

Register your interest

Share your details and the research team for "Neurodevelopmental Disorder Diagnosis During Adulthood…" will contact you if you may be eligible. Always speak to your GP before agreeing to take part.

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