INFORMATION ABOUT THE ASD RESEARCH DATABASE


Researchers at the University of Reading are establishing a research database to help find individuals who might be willing to help with psychology studies. This team comprises of Dr Fiona Knott (Clinical Psychologist in West Berkshire and Associate Professor of Clinical Psychology at the University of Reading), Professor Bhismadev Chakrabarti (Professor of Neuroscience and Mental Health at the University of Reading, and Research Director of the Centre for Autism).

There are a number of researchers in Berkshire who have a keen interest in learning more about Autism Spectrum Conditions. By finding out more about the difficulties faced by both the individuals coping with these problems and their families, we may be able to improve the services provided. However, we also want to ensure that families are not overwhelmed by requests to take part in research studies. One good way of making sure this does not happen is to hold a list or ‘database’ of people who are happy to be contacted about research. Having such a database will ensure that individuals are only approached if they are interested in research studies, and also that they are not overloaded with requests. 


You have been invited to join our research database because you have a diagnosis of Autism Spectrum Disorder. It’s up to you whether or not you take part. There are no consequences if you decide that you do not want to be on the database or take part in any research. 


Being on the database does not mean that you are committed to taking part in research. If you receive a request to participate in research, you will be free to decide whether or not to go take part at that time. Being on the database simply means that we will let you know about studies you might be interested in.


If you would be interested in being part of our database, then please read carefully the information below. This will tell you more about how your information will be used, and how your confidentiality will be protected. If you do decide to be on our database then please complete the online questionnaire below. If you do not want to be on the database, you do not have to do anything. Your name will not be on the database unless you register online.



If you have any questions about the database, you are very welcome to contact us! You can reach Dr. Fiona Knott via email (f.j.knott@reading.ac.uk) or telephone (0118 378 7534) or Professor Bhismadev Chakrabarti (b.chakrabarti@reading.ac.uk). We will do our best to answer any questions you might have. 




Further Information


How will the details I provide be used?

If you agree to be part of the database, then the information you provide will be placed on a secure database held on a networked computer at the University of Reading. The database will be password protected. If you choose to join the online database (this option is available only for people over the age of 18), you will have a chance to print off the consent form and this information sheet for you records. If you choose to fill in paper copies of the consent form and information sheet, these will be kept in a locked filing cabinet at The University of Reading. Your details will be completely confidential and no-one will know if you choose not to participate.


The database will be used by researchers to find participants for psychology research studies. All projects will have received ethical permission to go ahead from the NHS ethics committee, and/or the University of Reading research ethics committee and researchers will have received a Criminal Records Bureau (CRB) check where appropriate, to help ensure the safety and wellbeing of participants. The database administrators (currently Fiona Knott for the children and families database, and Bhismadev Chakrabarti for the adults database) will act as gatekeepers. This will help ensure that individuals on the database do not receive too many requests to take part in research. However, you may receive requests to take part in other reputable studies from other researchers who do not know about the database, and who approach you through other means. Secondly although it does not guarantee the quality or benefit of the research, the database will help us to make sure that all projects have ethical approval. Your details will not be passed to researchers unless this has happened.


What will happen if my name is put forward for a research project?

You will first be sent a letter about the research study by the researcher. They will make it clear that they have been given your details via the database. At this stage you can opt in or out of the project, or ask to have your name to be removed from the database. Sometimes researchers will telephone participants about the project, but this will only happen after you have been sent a letter. You will have the chance to opt out of the telephone call at this stage too.


What about data protection? 

The database will comply with the University of Reading’s Data Protection Policy. You have the right to view your details on the database and to have them removed at any time. The database will maintained securely as described above. If researchers are members of the University, they will be given temporary access to the database to obtain relevant information about participants. If they are not member of the University, the relevant information will be copied onto a disk which will be passed in person to the researcher and destroyed after use.


Will my medical records be used? 

No, your medical records will not be used. The only information on the database will be the information you give us on the attached form.


What are the possible benefits of taking part?

The benefit of taking part is that only people who are interested in research should be contacted. 


What happens if I want my name to be taken off the database?

If you would like your details to be removed at any time, then you should contact the database administrator (currently Fiona Knott (children and families) and Bhismadev Chakrabarti (adults)) by email, phone or letter. Your name will be removed without question and there will be no consequences for you in terms of the services you receive from the NHS or any other organisation.