The register will hold the names of people interested in taking part in research related to autism.
You can read more about the studies which are open to recruitment by visiting the website.
What does this research aim to do?
This research will allow us to learn more about autism, which may lead to better care and an increased understanding of autism.
They would like to invite adults (over the age of 18) with a formal diagnosis of autism to join the research register.
At this moment in time, they are not running any studies for people without a formal diagnosis of autism. Their portfolio of autism research may change over time, and this will be reflected on their website.
If you are interested in joining the Autism Research Register, please complete the registration form on their website.
After receiving your registration form you will receive an email confirmation from lpt.researchdelivery@nhs.net . Approved members of the Research & Development (R&D) Team will then be in touch on your preferred method of contact.
Before joining the research register, you may choose to discuss with your family and/or friends about your decision to join and the studies LPT are currently running. If you have any questions, you can refer to the ‘Frequently Asked Questions’ on the page. Alternatively, you can contact the Research and Development team (lpt.researchdelivery@nhs.net), and they will answer any questions you might have.
Autism related research: Risks and Benefits
Autism related research is a controversial topic. For many years, autism was wrongfully seen as a disease or an illness. Some studies have searched for the cause of autism or to see if it could be predicted before birth. Other studies have highlighted differences in the ways autistic people think and act, sometimes with the intention of trying to change this.
The majority of autism studies have focused on children and mostly on males, meaning that there is limited research on autistic girls, women and adults. It is possible that information gathered in some studies might be used to try and find a ‘cure’ for autism or to stop autistic people being born.
At the very least, information could be used to try and change behaviour of autistic people to meet the preferences of non-autistic people. As you can imagine, many autistic people do not agree that autism needs to be ‘cured’ or stopped, and they do not agree that autistic people should have to change their behaviour to meet others’ preferences.
They can feel that a lot of autism related research has been done to them, rather than for them. This is why autistic people are often cautious about taking part in studies.
Fortunately, there are now many more autism related studies that aim to help autistic people have better outcomes in areas such as mental and physical health, work and education.
There are now more researchers that consult with autistic people on designing their studies and try to answer questions which autistic people themselves want to ask, and there are some projects being led by autistic researchers. It is hoped this sort of research will become more common and that it can help to make positive differences to the lives of autistic people.
If you wish to get involved in a research project, and before you agree to take part, you should always make sure you fully understand any possible risks and benefits. To help you work this out, here are some things you should find out about:
- All the details about what will happen – such as what you will be expected to do
- What sort of information is being collected?
- What this information is being used for – for example, is it being used to help improve the lives of autistic people?
- Whether the information collected about you will be used for a single study, if it could be used in future studies or even sold to other people
- If you would have a choice about who your information can be shared with
- Who has provided the funding for this study? Sometimes organisations who still believe that autism should be ‘cured’ give money to research projects
Any research organisation should tell you this information. If they are unable to do this, you may wish to avoid taking part.
