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Studies

Movement and Fitness in Children with ASD

About the Study
We are looking at the way children with neurodevelopmental disorders move. This is comprised of a thorough analysis of walking patterns and coordination. We are also looking at fitness levels and the amount of energy used for certain tasks. Deirdre Kindregan is a qualified physiotherapist and a member of the research team and is leading this study.

Who can take part?
We are looking for males and females with and without ASD and/or Dyspraxia to take part in this study. Specifically we are looking for children between the ages of 6 and 18.

What will it involve?
The study involves two testing sessions. The first session involves an IQ test and some questionnaires. The second session involves a coordination test, energy expenditure analysis, walking pattern analysis and a fitness test and will take approximately 2 hours.

Arrangements are also made for participants with ASD to complete ADOS-2 and ADI-R assessments during the first session if these have not yet been done.


Interested in taking part?
If you are interested in taking part in this study and would like more information please contact the Autism Research Team at autism@tcd.ie or +353 1 8962315.

FemNAT

What is the study about and what are its goals?
We are studying how our brains deal with emotions, and how we control our emotions and temper. We are trying to understand why boys and girls behave differently, and why some children are seen by others as having more difficult behaviour.
       
We want to know how the brain reacts to faces showing different emotions. This will help us understand how people behave in real life. We also want to look at how children understand emotions in others, and why some children are better at this than others. 
        
If we know more about why children behave differently, we may be able to help some children do better at school and at home.

What does the study involve?
As part of the study we will collect blood samples from you and also ask you to spit into a plastic pot to measure stress hormones and look at your DNA for genetic testing. 

The study will include the following, which may take place on the same day or two separate days:

  1. We will first meet you and your parent or guardian.  We will tell you more about the study, and ask you and your parent/guardian questions about your moods, thoughts, and behaviours. A part of the interview will be audio or video recorded to make sure that the interviews are done correctly. We will also be asking about your lifestyle (e.g. if you exercise, the type of food you eat, whether or not you drink alcohol). This session will take about 1.5 hours and you will be paid 10 euro. Please note that if you tell us anything that we feel may be putting you at risk such as drinking alcohol, using illegal drugs, engaging in sexual activity or criminal activity we will have to inform your parents.
  2. You will come to the university or clinic for around 3 hours and you will be paid 20 euro.We will show you faces with different emotions, ask you how you make decisions, and give you some puzzles to do. The games you will be playing are not very hard and are quite fun. We will ask you to wear some sensors on your chest, back, and fingertips to measure your heart rate and tiny changes in how much you sweat. We will also collect your blood, saliva, and DNA samples at this stage. Pease note that DNA samples derived from this study will be stored in our local biobank in TCD and in the Consortium biobank in Frankfurt. All information collected from you will be securely protected while in storage at TCD and when they are transferred to Frankfurt. If you do not want to do any of these parts of the study, you do not have to.     

Will this be the only time I take part in the study?
Most young people will only take part in the study once, so after they have completed the computerised testing session their involvement in the study will be over.  However, we will be contacting some young people in around 18-24 months’ time for a follow up study.  You are free to opt out of any part of the study if you wish.

What should I do now?
If you would like to take part in the study, please ask your parents/guardian to contact 01 8962315 or femnat@tcd.ie. You can also go to our website for more information http://femnat-tcd.com/ . We will then get back to them to organise the first session.

IDeAS

What is the study about and what are its goals?

IDeAs is a research project that will help us understand better how children think and feel when they are afraid, what makes them anxious/nervous and what happens in their body when they are experiencing these thoughts and feelings. We are also interested to find out more about children’s activity during the day and sleep during the night. This study is interested to look at the changes in children’s body while they are experiencing stress/anxiety. If we can find out more about how you think and feel in different situations that make you nervous, we will be more able to help you and other children cope better with these thoughts and feelings and experience all sorts of situations at the same time.

What does the study involve?

We would like to know what you and your parents think about your fearful situations. At the same time, we would like to look at how your heart rate, skin, respiration, voice change when you experience stress.

This study is a basic research study that looks at the changes in children’s body while they are experiencing stress/anxiety. It involves filling in questionnaires about your parents and your social skills, fears and fearful situation. You can complete this at home or at the clinic with the assistance of one of the researchers. Subsequently, you will be asked to attend the clinic for one or/and two meetings with the researchers. 
At this meeting, the researcher will go through a stress task with your. This involves a self presentation for 5 minutes and performing mental arithmetic calculation in front of two or three unfamiliar persons for 10 minutes. While these two tasks take place we will have a monitor that will be attached to the child’s body and electrodes. This will help us record your heart rate, skin response, respiration and voice before, during and a while after the task. The meeting takes about one hour. Some children may find these tasks very easy, for others it may be more challenging. 

We will give you to wear a watch that will record your sleep In two separate nights. This will be very easy as you don’t have to do anything special just sleep as you usually do.  

We will also ask for your collaboration with us in collecting the saliva samples which will have to take place five times per day, two days in a row. The reason we need to do this is to look at the level of stress hormones in two regular school days of a week. We will need to take a few samples of saliva before and after the stress task. There will also be collected two saliva samples to look at how the hormone melatonin influences your sleep.

How will my child’s privacy be protected?

We will keep your child´s information on a secure database in which the information will be confidential and anonymous using a unique study code. Only researchers who are participating in this study will have access to this data. 

You do not have to take part in this project if you do not want to, but we hope you will be able to help research. You may withdraw from the study at any time without any consequences. . This will have no impact on your child’s treatment. To withdraw from the study you need to inform the researchers involved in the study.

What should I do now?

If you would like to take part in the study, please ask your parents/guardian to contact +353 1 8962315 or autism@tcd.ie. You can also go to our website for more information. We will then get back to you to organise the first session.

MRI study on Theory of Mind in Autism

About the Study

We are using brain-imaging techniques (MRI) located in Trinity College to investigate brain structure, function and connectivity in people with Autism Spectrum Conditions (ASC). Participants lie in an MRI machine, which takes pictures of their brains. The purpose of this study is to investigate brain activity and connectivity in children and adults with ASC when specifically palying games involving Theory of Mind tasks. Theory of Mind or mentalizing is an umbrella term which encompasses all the capacities of a person for understanding the perceptions, beliefs, desires, intentions and emotions of other people.

Who can take part?

We are looking for participants with high functioning ASC totake part in this study. Specifically, we are looking for right-handed males between the ages of 15 and 30 who would like to take part.

What will it involve?

The study involves two testing sessions. In the first session participants are asked to do a cognitive test. This session can take place in the home or in Trinity College. In the second session, participants will be invited to the Trinity Institute of Neuroscience for an MRI scan which will take approximately and hour and a half. Arrangements are also made for participants to complete ADOS and ADI-R assessments during the first session if these have not yet been done.

Interested in taking part?

If you are interested in taking part in this study and would like more information please contact, Dimitris Bolis, by email: bolisd@tcd.ie or T: 0894379474

 

MRI Autism Reward Study

About the Study

We are using brain imaging techniques (MRI) located in Trinity College to investigate brain structure, function and connectivity in people with Autism Spectrum Disorder (ASD). Participants lie in an MRI machine which takes pictures of their brains. For the first part of the scan, participants will be able to watch a DVD following which they will be asked to do a short computer based task (like computer games).

Who can take part?

We are looking for participants with and without ASD totake part in this study. Specifically, we are looking for right handed males between the ages of 10 and 25 who would like to take part.

What will it involve?

The study involves two testing sessions. In the first session participants are asked to do an IQ test as well as some short computer based tasks. This session can take place in the home or in Trinity College. In the second session, participants will be invited to the Trinity Institute of Neuroscience for an MRI scan which will take approximately and hour and a half. 

Arrangements are also made for participants with ASD to complete ADOS and ADI-R assessments during the first session if these have not yet been done.

Interested in taking part?

If you are interested in taking part in this study and would like more information please contact, Jacqueline Fitzgerald, by email: fitzgeje@tcd.ie or Tel. +353 1 896 4102

 

Molecular Genetics Study

Background information:

Autism is a profound neurodevelopmental disorder of childhood affecting approximately 0.6-1% of the population. It is defined by deficits in social interaction, communication and a rigid and repetitive behavioural style. There is no known cure for autism but advances in molecular genetics are helping to highlight the underlying mechanisms in the brain that might be involved. Known genetic causes have been identified in around 10% of autism cases attributable to rare changes in the genetic sequence. We are interested in investigating further the genetic cases of autism to help clarify the totality of genetic causes that ultimately will lead to better diagnostics and therapeutics. Our research group has been engaged in understanding the underlying causes of autism at the genetic level and neurobiological level for more than 12 years. We run a program of clinical recruitment to our genetics research program and use samples of DNA obtained from individuals affected by autism and their family members to study genetic factors. We have established a database of individuals and their DNA for our research program and are involved with a large group of international collaborators within several research collaborations, e.g. The Autism Genome Project (AGP). The aims of this study include the continued ascertainment and recruitment of individuals with autism and their family members to our genetics study and for further collaboration with our international researchers. Specifically our investigations will involve studying both the underlying genetic and structural changes in genes and the investigation of common genetic variation. We will combine molecular and clinical data, such as cognitive measures and neuroimaging data to further our understanding of the interactions between genes, biology and behaviour.

Who is being included in this study?

People with autism and their families.

What does this mean for me?

You are being contacted about the Molecular Genetics Study to ask your permission to include your child’s DNA as part of a group of individuals with autism that are being sequenced. If you agree to participate we will include your DNA in an established database of individuals for our research program and are involved with a large group of international collaborators within several research collaborations, e.g. The Autism Genome Project (AGP). This information will also be anonymous and will not contain any personal identifiers. If you wish to participate we will ask you to sign the consent form that is at the end of this document. If you do not wish to participate we will ask you to sign the opt-out form. If we do not hear from you in four weeks we will give you a call to ask you if you have any more questions about the project. If you wish to contact us first, please find the contact details at the end of the form. We will also be happy to arrange a time to meet with you to discuss further.

What are the risks associated with participating?

There are no medical risks as we are not requesting you to take part in more procedures at this point.

Will I get feedback about my DNA results?

We are not planning to routinely feedback the results of the DNA testing or give you your child’s genetic sequence. However there are a few rare instances where we might find out something that is important to your child’s health.

  1. We might discover a genetic change that has caused your child to develop autism or may affect his/her condition in some other way. If this finding is thought to be of enough significance to his/her condition we will contact you to arrange for you to have the finding confirmed in a clinical genetics laboratory. We will contact your GP to let him know that we will refer to clinical genetics for further testing. You will be offered follow up within the clinical genetics service who will give you more information about the meaning of the finding to your child’s condition.
  2. There is a chance that we may come across genetic changes that place your child at significantly increased risk for another disorder or illness, not autism. We will not routinely search for such genetic changes but there is a possibility that we or other researchers might identify these. If this happens the researchers in the Molecular Genetics Study will feed that back to us and we would tell you about it. We will only inform you if you agreed to being informed and if there is an available intervention or investigation that would be beneficial to your child. The benefits of this intervention should outweigh the risks.

In either case you may either consent to be told this information or you can tell us that you do not wish to know this information. You can indicate your choice in the consent form.

Findings that are not clinically relevant but may be interesting to follow up:

We may find genetic changes in your child’s sequence but do not know if these are responsible for your child’s condition. In this case we may wish to conduct further investigations and contact you for additional procedures. You can indicate in the consent form if you can be contacted in this case or if you do not wish to be contacted.

How will this research benefit me?

You and your child will not receive direct benefit from participation in this research project. By taking part in the study you will help to provide information to understand more about the genetics of autism. This may be of help to other people affected by autism in the future.

Will this research change the interventions or services that I receive?

There will be no change to the interventions or services your child receives whether you take part in this study or not. It is your right to choose whether you take part.

How will my child’s privacy be protected?

Any information we have on file for you is entirely confidential. All your child’s details are stored in a locked research room. Only researchers working in the Autism Genetics Group in Trinity have access to these details. The information that we share and the information uploaded into the database is given a unique study number. No details that might identify you or your child are shared with the researchers outside our group in Trinity. Any researchers who want to use the data will have to apply to a Data Access Committee and sign a legally binding data access agreement. In this they will agree:

  1. To use the data for research only
  2. Protect the confidentiality of the data
  3. Keep the data secure
  4. Not to make any attempt to identify any person within the data
  5. Not to give the data to anyone who does not have the permission to access the data or share any part of the data that could identify a person.

The results from the analysis of your DNA will not be released or shared in any way with your relatives, with insurance companies, or any third party not involved in research. When results of this study are published, your child’s name will not be used.

Costs and compensation:

There are no costs to you personally by participating in this research study. You will not receive any payment for your child’s DNA.  No commercial company will have direct access to your child’s information. It is possible that the results of this study, which will be in the public domain, may help with the development of a commercial product, e.g. a treatment or a diagnostic procedure. You and your child will not receive any benefit from this.

There are no risks to your child’s health by taking part in this study. However the doctors involved in the study are covered by standard medical malpractice insurance and the scientists are covered by professional liability insurance by the Institutions within which they are employed. Your rights and the rights of your child are not curtailed by this document.

What should I do if I wish to withdraw from the study at any point?

You have the right to leave the study at any time without giving any reason, and without penalty. If you wish to leave the study, contact the Project Co-ordinator, Prof. Gallagher, or any member of the research team. We will inform the management committee of the Molecular Genetics Project to remove your child’s details using your child’s study number. They will take the necessary steps to remove the information about your child’s condition and his/ her genetic sequence from the database. If you decide to withdraw before the information is available on the database we can guarantee that no other person will have access to the data. If the information has already been uploaded to the database we can remove the data so that it is not used from that point forward. If some researchers have already applied for data that includes your child’s information it may not be possible to withdraw his/ her data from studies that are already completed.

What do I do now?

You can find out more information about the Molecular Genetics Study and Autism Genome Project online at:

http://autismgenome.org/

http://www.tcd.ie/medicine/psychiatry/research/neuro/autism/

In relation to participation in the study contact:

Dr. Nadia Bolshakova +353 1 896 2144 or autism@tcd.ie