About Spectrum 10K
Spectrum 10K aims to investigate the genetic and environmental factors that contribute to autism and related physical and mental health conditions to better understand wellbeing in autistic people and their families.
Spectrum 10K is the largest study of autism in the UK and is a research study involving 10,000 autistic individuals of all ages and abilities, and their relatives living in the UK. It is led by a team of researchers at the University of Cambridge, including the Autism Research Centre, the Wellcome Sanger Institute and the University of California Los Angeles (UCLA). Click here to meet our team.
The study will not look for a cure for autism or develop a prenatal test for autism and does not aim to eradicate autism. The Spectrum 10K team works within the values of the Autism Research Centre. We respect autistic people’s differences and work to promote inclusion, acceptance and dignity for autistic people throughout society. We support research into interventions or treatments for co-occurring conditions that cause distress, such as anxiety, epilepsy, and gastro-intestinal pain.
What is involved?
When you sign-up to take part in Spectrum 10K, you will be asked to complete an online questionnaire that typically takes approximately 30 minutes to complete, and provide a DNA saliva sample. You will be sent a DNA sample kit which you can use to post your saliva sample back to the Spectrum 10K team. Spectrum 10K researchers will study the information collected from the questionnaire and DNA saliva sample alongside your electronic health records (EHRs).
You will have the option to complete additional questionnaires. You can complete these all at once, or save your progress and complete these in your own time. To better understand co-occurring conditions and wellbeing in autism, we may re-contact you to participate in other ethically approved studies.
Participation is voluntary and will be ongoing unless you choose to withdraw. You can withdraw from the study an any point, without giving a reason. This can be done online or by contacting the team at info@spectrum10k.org.
Three simple steps to get involved
Autistic individuals can register themselves, or be registered by their parent, legal guardian or carer, where applicable. To register, please click here to sign-up and follow these simple steps:
- Step 1: Read the study information sheet and decide whether to participate in the Spectrum 10K study. If you would like to participate please complete the online consent form. You can contact the Spectrum 10K team (via email or phone) if you require more information about the study.
- Step 2: Register your details and complete the 30 minute sign-up questionnaire. This will include questions on the following: name, date of birth, email address, NHS number (if known), GP details, diagnostic and demographic information, social, lifestyle and medical history.
- Step 3: Provide a saliva sample. A saliva DNA collection kit will be sent in the post with accompanying instructions and a free return envelope.
Why are genetic and environmental factors important?
We know that autism is partly influenced by a person’s genes. However, autism is not entirely genetic. This means environmental factors play a role in autism and need to be understood too.
Together, genetic and environmental factors contribute to differences in autism and to the wellbeing of autistic individuals. Spectrum 10K is not searching for a cure for autism and does not in any way support that approach. Instead, Spectrum 10K aims to better understand how biology and environment contributes to autism, to improve diagnosis, support, clinical care and quality of life of autistic individuals and their families.
Watch this video to understand more about genetics and autism.
What are the benefits of taking part?
There are no direct benefits of taking part. However, Spectrum 10K will help to further our understanding of the relationship between genes, environment, autism and related conditions. We hope to use the information gained from this study in consultation with the autistic community to improve diagnosis, support, clinical care and quality of life for autistic people and their families.
Joining the Spectrum 10K community is also an opportunity to receive news about autism research, receive invitations to upcoming talks or events, and be invited to participate in other important research projects.