PLEASE NOTE: The Researcher Applications process is currently undergoing a transition, and this webpage will be updated shortly to reflect the new process. In the meantime, any applications sent to ASD-UK/Daslne will now be passed to the charity Autistica to process.
The Autism Spectrum Database-UK (ASD-UK) and the Database of Children with Autism Spectrum Disorder in the North East (Daslne) aim to:
This page contains information about making an application to recruit families through ASD-UK and Daslne (referred to from now on as 'the Databases'). The application process is straightforward and decisions about how the Databases can help are made within one month. There is a modest cost for staff time used to contact families on your behalf.
The following are quotes from researchers who have successfully recruited through the databases:
“We contacted ASD-UK and Daslne to ask them if they could assist us in recruiting parents of children with ASD for a research project we were undertaking at our university. The team members have been a pleasure to deal with as they promptly reviewed our request and comprehensively answered all of our questions about how best to proceed. They were able to specifically identify members who matched our research criteria (e.g. age) therefore making sure this recruitment drive was precise but efficient for us. The mailing of recruitment information through ASD-UK and Daslne was straightforward and systematic and included follow up reminders on our behalf. We have managed to recruit a lot of participants to our study as a result of their assistance.”
“I circulated a large international survey to parents of children with autism via the ASD-UK and Daslne databases. The process was both thorough, with examination by an independent ethics committee including stakeholder representatives, and straightforward. We received near to 300 responses to our survey but more importantly we felt that our research had received a valuable ‘seal of approval’ from the ASD-UK and Daslne teams, which was meaningful to participants.”
We are very happy to speak with you about your application please telephone us on 0191 282 5965 or email us at [email protected] if you have questions or need any assistance.
Paperwork for research applications to be reviewed at a meeting should be submitted at least two weeks prior to the meeting taking place.
We have put together the answers to some frequently asked questions about the databases and hope you'll find this information useful.
Frequently asked questions:
Applications are welcomed from any UK ASD researcher intending to undertake a high quality research project that aims to improve our understanding of ASD, and which may lead to significant advances in the care and treatment of children with ASD. UK researchers working in international collaborations on a research study can also recruit through the databases. Most applicants will have strong connections to the NHS or UK Universities, or will be commercial organisations.
All researchers wishing to recruit families from the Databases should initially contact us by email ([email protected]) to let us know you wish to make an application. We will then timetable your application to be reviewed at the next available Databases Research Committee meeting slot and ask you to send us the following at least two weeks before your allocated meeting:
The Databases are committed to supporting high quality research and providing families with appropriate research materials.
Criteria for research likely to be approved include:
Your application documents will be reviewed by the Database Research Committee, which includes experienced professionals, researchers and parents. We will give you the opportunity to provide further information to the Database Research Committee via a short Skype or telephone call during the meeting where possible. We will then contact you within four weeks of receipt of the study documentation to let you know whether your application has been successful and if so, discuss the practicalities of helping with recruitment. As would be expected from our aims, most applications to recruit through the Databases are supported. Where an application lead is a member of the Research Committee, that individual will not be involved in the discussions.
ASD-UK/Daslne are mindful of not overloading families with research requests. In principle, the same family will not be approached about more than one project at a time – this approach is overseen by our Parent and Steering committees. Thus it is possible that some research studies may be delayed in starting recruitment. We now hold a list of applications to recruit to ASD-UK – if you would like to approach us about a certain project and register your interest to recruit, while seeking funding, we are happy to hear from you. The list of recruitment applications is held by the ASD-UK leads, and is subject to independent oversight by the Steering Committee chair. As the list contains researchers’ private Intellectual Property, its content will not be discussed with researchers. Where multiple groups wish to contact ASD-UK families about the same or very similar project, the first applicant to the database will have first opportunity to conduct their project – this process is overseen by the independent Steering Committee Chair.
The research committee gives feedback to researchers, and here are some pointers in advance that may help your application go through smoothly.
Discussions with senior UK clinicians and researchers during the pilot phase of ASD-UK showed there is broad agreement that there should be a modest cost for recruitment through the Databases.
The costs of reviewing your initial documentation are covered by the Databases through grant funding from Autistica, and through Newcastle University. Autistica and Newcastle University also fund some of the staff time needed to perform relevant data searches about which families to contact, and time spent contacting and reminding families; there is therefore an expectation that some of the work is funded by a researcher contribution. The Database team staff time costs ranges from £250 to a maximum of £950; most projects will cost us between £250 and £600 on staff time (excl. VAT). This range of costs was calculated by working out the actual staff time required to administer previous projects supported by the Databases. ASD-UK and Daslne will only charge you for the number of staff hours we need to spend on your project – we will let you an exact figure when we have reviewed your application.
Here are some of the tasks the Database team needs to do to support your application: Prepare our covering letter to go with your materials or emails; complete searches for Database families who meet your criteria and who haven’t been contacted about another project very recently; prepare envelopes, contact families; record on our database who has participated; send reminders to non responders; complete final participation data on our database; receive and edit your project summary.
We suggest that researchers apply for the funds needed to recruit through the Databases when making research funding applications; this has been done successfully by a number of research groups. To help you, we are happy to have discussions around your project and likely costs before you submit your funding application.
Please note that we are only able to generate an invoice if a purchase order is provided. Payment can alternatively be made by card or bank transfer.
Yes, we welcome approaches from commercial organisations. The research Databases are funded through grants from the research charity Autistica and by Newcastle University, and receives support from NHS sites and voluntary sector organisations regarding recruitment. The Databases will therefore support research recruitment to publicly funded research at 'cost', but recruitment for commercial organisations will cost more. We are happy to discuss with commercial organisations how the Databases can support research and development, and recruitment to studies, and the costs associated with that. In addition, some companies may wish to commission the ASD-UK/Daslne team to undertake surveys and consultation about research. We will be very happy to discuss this with organisations on an individual basis.
Finally, any potential projects led by companies will be reviewed by a Database research committee in the usual way; if peer review is needed, we will arrange this and let you know the associated cost. Where there are any concerns about conflict of interest, the Database Steering Committee will be consulted.
We will ask you for a short lay summary (100-200 words) about your project, and we will put this on the ASD-UK/Daslne websites. Please use language that is as non-technical and engaging as possible to help recruitment.
By using our core dataset about children, the Databases team will identify families who meet study criteria. You will be asked to supply us with everything needed to contact parents about your study:
For all studies, the first contact with the family will be made through the Databases team - we are unable to provide you with names and addresses of families contacted. Families who are interested in taking part in a study will then return the expression of interest form directly to your research team, or contact you by phone or email, and you would then recruit them according to your study protocol.
If your protocol involves collecting data from families who give you their name and contact details, you then need to let us know which families have participated. After an agreed interval (usually around 4 weeks) we will send a reminder to families you have not heard from.
Researchers will be required to provide a summary of the findings on completion/publication of the study. This information will be posted on our website and may be included in our biannual newsletter.
Yes. ASD-UK and Daslne are undertaking a number of initiatives to make research participation 'family friendly', and use data most effectively. These are all aimed at reducing the time children and parents spend on research (including having the same assessments many times), making data collection easier for researchers, and providing the ASD research community for opportunities for best use of data in the future.
On completion of your project we would like you to provide a lay summary of your main research findings, their impact, and importance for children and families. This can link to any research papers that are open access or other dissemination sites.
We would be grateful if your research publications could mention ASD-UK and/or Daslne in the research methods and acknowledge the Database's role in recruitment, and our funder, Autistica. Standard paragraphs for this are pasted below:
For the methods section of your paper/presentations: 'Recruitment was through the Autism Spectrum Database-UK (www.ASD-UK.com) and/or Database of Children with ASD Living in the North East (www.daslne.org). Families whose children met the study criteria were initially sent information about the study by email or letter, and reminders were sent to non-responders.'
For the acknowledgements section of research papers/presentations: 'We are grateful to the Autism Spectrum Database-UK team (www.ASD-UK.com) and/or Database of Children with ASD Living in the North East (www.daslne.org) for assistance with recruitment. ASD-UK/Daslne is funded by the UK autism research charity Autistica.'
Yes. The Database team are committed to providing data to researchers where publication will advance our knowledge about ASD, or lead to high quality research projects being funded. A list of data that we have gathered is available here
ASD-UK and Daslne have clearly stated to parents that identifiable data will never be released to anyone else (without them consenting to do so). ASD-UK and Daslne Steering Committee parents have previously supported the sharing of anonymous data given by parents where their use may advance our knowledge about ASD.
Researchers connected to a UK University or NHS Trust can apply to receive a defined amount of anonymous data by completing this Data Management Form. UK researchers working in international collaborations on a research study can also receive data. The application will be reviewed in the usual way by a Database research committee; if the application is successful a data sharing agreement will be required between you and the Database leads. Due to our staff time in preparing data a data file and ensuring no families could be identified through the data, funding will be required to pay for staff time. The staff time costs range from £250 to a maximum of £950; most projects will cost us between £250 and £600 on staff time (excl. VAT). The Database team will only charge you for the number of staff hours we need to spend on your project – we will let you an exact figure when we have reviewed your application.
Here are some of the tasks the Database team needs to do to make your dataset ready for sending: Prepare the data sharing agreement; search for and extract relevant data from the database; complete anonymisation of the data (both simple and complex– for example, some families could potentially be identified through relatively uncommon combinations of characteristics).
Whilst it is not a requirement, we hope most applicants will want to conduct data analysis with a degree of collaboration from us.
Over the last 10 years, we have learnt a lot about how the databases can best support researchers. We have made changes to our processes following feedback from researchers and parents. If you have suggestions about the processes around recruiting from the Databases, please email [email protected].