BASIS adopts a scientific strategy designed to encourage and facilitate collaboration, rather than competition, between different centres within the UK. Since many centres in the UK are in close geographical proximity, it is feasible for the same infant siblings to visit different sites with different expertise and methods. This focus on multiple measures gathered on each individual infant may be critical if it transpires that accurately predicting risk depends on understanding combinations of different factors.
The Scientific Board has agreed that a primary strategy of BASIS will be to combine several proposed scientific projects into a single large-scale multi-site scientific study. This will both maximise efficient use of the network resources, consolidate available funding, and add scientific power and breadth.
A second strand to the scientific strategy is that BASIS will consider affiliated scientific projects making use of the Recruitment Database and the shared Network Protocol measures. However, the network cannot currently support collecting additional or Network Protocol measures on behalf of single site affiliated projects. Network Protocol measures will be available to affiliated projects, but experimental scientific measures from scientific projects will remain under the control of the particular Principal Investigator (PI) concerned. These strategies will foster collaboration that may result in a truly national effort.
In 2009, BASIS held various consultation activities to identify scientific priorities in addition to the behavioural measures in the Network Protocol. Areas identified include genetics and family studies, brain functions (behavioural and electrophysiological measures, structural and functional MRI), language and literacy development and pilot interventions. Another area of priority is to combine various measures within a single infant. Formulation of these priorities was based both on the scientific merit of these research directions as well as their feasibility given the resources available to the network and collaborating centres.
Relationship to other national and international networks
The BASIS network will work in partnership with existing national and international research networks with shared aims.
The Advisory Board includes representatives from the North-American Baby Siblings Research Consortium (BSRC) and Research Autism ensuring that avenues of cooperation are maximised and pursued. Members of the Scientific Board are also affiliated with the Mental Health Research Network (MHRN), MRC AIMS imaging of autism network, and other UK and international autism-related networks. In the short term, two strategies for international cooperation have been identified. First, the Network Protocol involves common measures gathered in the BSRC, allowing for international data-pooling. Second, there are specific plans to record common EEG (electroencephalography) measures from infant siblings across specific centres in the UK and the US. The potential benefits of global collaboration on the most technically demanding aspects of infant siblings research are enormous.
Relationship to community organisations and families taking part in research
BASIS is committed to delivering high-quality scientific research with the active involvement of stake-holders. Specific policies will ensure the protection of dignity, safety and well-being of all participants taking part in affiliated projects. The Advisory Board includes representatives from a number of community organisations (Autism Speaks, National Autistic Society, Autism Cymru, Scottish Society for Autism). Through its various functions, BASIS will aim to increase ethics awareness and promote good practice as defined by the UK Department of Health and the NHS, as well as more specific issues related to research with infants at-risk.
BASIS researchers can regularly access advice and input from a Clinical Committee, chaired by Consultant Paediatrician Dr Gillian Baird. The Committee’s main responsibility is to provide consistent and timely advice for the research teams in relation to clinical and/or ethical issues arising for individual participating families throughout the course of the project.
Project proposal and approval
Please see details under Collaboration and Project Affiliation.
Data Sharing Policy
Data collected by affiliated projects are either:
(a) shared Network Scientific Protocol measures (stored in the Data Repository) or
(b) Affiliated Scientific Project measures that may or may not be shared across multiple projects.
The Data Repository is accessible to affiliated projects upon request once data entry and quality check is completed. Data sharing or information on experimental tasks or measures collected through BASIS projects not included in the Network Scientific Protocol is done with the agreement of the PI of that project and often in coordination with any individuals involved in designing or analysis of specific tasks.
For further details on our data sharing policy, please see our Memorandum of Agreement between BASIS and Affiliated Projects.
Authorship and Publication Policy
Authorship on papers should follow standard practice. The authorship and publication strategy will be formally agreed for each project. This may include guaranteed authorship for core network staff for certain projects where they significantly contribute to data collection. All publications that arise from the scientific projects affiliated to the network will credit BASIS and its leading funders.
Please refer to our Authorship Guidelines for Publications from BASIS Affiliated Projects.
BASIS is committed to the protection of dignity, safety and well-being of all participants taking part in affiliated projects. This is ensured at multiple levels. First, BASIS has secured ethical approval for the main network functions, i.e., recruitment, assessment using the network protocol and public information. Second, all projects seeking affiliation with the network are required to independently obtain ethical approval by recognised committee as a condition for affiliation with the network. Third, information functions of the network are specifically planned to ensure that accurate information is presented to participating families and that dissemination of findings from affiliated projects is done in an appropriate and timely manner.
BASIS takes the protection of all personal information very seriously and complies with the Data Protection principles set out in the 1998 Data Protection Act.
BASIS will publish and regularly update a public list of all affiliated projects, research sites, and scientists on the network website: www.basisnetwork.org.
Of fundamental importance within our data protection system is the security and confidentiality of all participants’ personal information. Personal data will be kept and processed securely and no unauthorised disclosures or transfers will take place to anyone either within or outside the BASIS coordinating centre. Any personal information provided by participants will be added to the BASIS Recruitment Database. The information includes contact details and demographic information, e.g. date of birth. Contact details will enable us to inform potential participants about research projects which they can consider participating in, or to send them information and news about BASIS. The demographic information ensures that we only contact potential participants about projects which they are eligible to take part in. The Database is accessed only by BASIS staff.
If we invite an individual to participate in a specific study we will provide them with the contact details of the researchers so that they may contact them directly. Personal information will not be used for any other purposes and will not be passed on to any other organisations.
Participants may contact us to request that personal data be removed at any time without having to give reasons or without affecting any of their rights.
To ensure that information is kept securely on the BASIS Recruitment Database and at the BASIS coordinating centre, we will store data in locked filing cabinets or on coded, encrypted or password protected computers. BASIS discourages the retention of personal data for longer than they are required.
Personal data will be disposed of in a way that protects the rights and privacy of data subjects. Manual records will be shredded or disposed of as “confidential waste”. Hard drives of redundant PCs will be wiped clean by secure electronic deletion before disposal.
Any videotapes of sessions will be stored in locked filing cabinets within a locked building and separately from any personal data that may allow identification. When the data is no longer required, the videos will be destroyed by use of a robust and secure method.
Data collected through BASIS Affiliated Projects
Data collected during affiliated projects will be coded and anonymised and stored separately from names or personal information. At no time will personal details be stored in the same database as test results. After it is anonymised, data may be accessed by BASIS affiliates only if the data is relevant for the projects they are conducting.
Once anonymised, results of the research may be published in public channels including scientific journals, community publications, and general press. No information that is published will enable individuals to be identified.