About ID
IASSIDD: The International Association for the Scientific Study of Intellectual and Developmental Disabilities is the first and only world-wide group dedicated to the scientific study of intellectual disability.
https://www.iassidd.org/
Mencap is a UK charity for people with a learning disability. They support families and carers.
https://www.mencap.org.uk
Special Olympics transforms lives through the joy of sport, every day, everywhere. They are the world's largest sports organization for people with intellectual disabilities.
https://www.specialolympics.org
About RCTs
The Medical Research Council (MRC) have been instrumental in the development of RCTs. They have produced a series of guidelines, and other publications, to help researchers develop high quality, robust trials.
MRC Home page: https://mrc.ukri.org/
The history of the MRC: https://mrc.ukri.org/about/what-we-do/history/
The MRC have produced guidelines regarding the planning and conducting of complex intervention studies. https://mrc.ukri.org/documents/pdf/developing-and-evaluating-complex-interventions/
As well as providing useful information of conducting the intervention trials, the MRC have also produced guidelines on conducting Process Evaluations. Process Evaluations are useful activities for monitoring, evaluating and understanding the process by which the intervention study was carried out. They help highlight areas of success and areas where the study, intervention, or measurements did not go to plan. https://mrc.ukri.org/documents/pdf/mrc-phsrn-process-evaluation-guidance-final/
CONSORT - In an attempt to improve the standard of reporting on clinical trials, a group of International experts collaborated in a project that resulted in a document called the CONSORT Statement. This statement provides a checklist of essential items which should be detailed when reporting the results of a clinical trial. The Consolidated Standards of Reporting Trials (CONSORT) “is an evidence-based, minimum set of recommendations for reporting randomized trials. It offers a standard way for authors to prepare reports of trial findings, facilitating their complete and transparent reporting, and aiding their critical appraisal and interpretation. “
There are now many different 'extensions' to the CONSORT statement, each relevant to different versions of theRCT methodology. http://www.consort-statement.org
The EQUATOR (Enhancing the QUAlity and Transparency Of health Research) Network ”is an international initiative that seeks to improve the reliability and value of published health research literature by promoting transparent and accurate reporting and wider use of robust reporting guidelines.” https://www.equator-network.org/about-us/
The SPIRIT 2013 statement provides guidance on RCT protocol development. https://europepmc.org/articles/pmc5114123
The TIDieR is a checklist and guidance for reporting intervention trials. https://www.bmj.com/content/348/bmj.g1687
Journal Articles linked to this Toolkit
The first phase of development for this toolkit was a systematic review of the trials literature. This review was published in the journal Social Science and Medicine. It can be found here: https://www.sciencedirect.com/science/article/pii/S0277953618300327
Link to our Interviews Paper (coming soon): this has been submitted to a peer-reviewed journal
Link to the Delphi Survey Paper (coming soon): this has been submitted to a peer-reviewed journal
Useful Articles
There have been a number of very informative research papers which have highlighted some of the challenges inherent in researching groups with intellectual disabilities.
CLICK HERE for a link to an interesting paper on by Lennox and colleagues on overcoming barriers to recruitment in ID studies..
CLICK HERE for a link to an interesting paper by Brooker and colleagues who conducted a systematic review regarding people with ID in research studies.
CLICK HERE for a link to an interesting paper by Beighton and colleagues regarding the experiences of people with ID who had taken part in a health research study.
CLICK HERE for an interesting paper Bollard and colleagues regarding the impact of health inequalities, from the perspective of people with ID themselves.
Downloadable Files
Links to downloadable and usable resources such as Participant Information Sheets, example consent forms etc. We hope that this section will grow, however, for this to happen we rely on the good will and generosity of the ID research community.
Here is an example of a consent form used with adults with mild ID: CLICK HERE TO DOWNLOAD