Title: Investigation of Parental Priorities for Research in Children with Neurodevelopmental and Genetic Disorders: A National Irish Study

Background: Very little research exists that investigates the opinions of people affected by neurodevelopmental disorders on a daily basis. The current research investigates what parents consider most important in terms of research for their children. This information my help to inform how funding is allocated and what areas need funding. Collaboration between families and the scientific community will create a research environment that is more structured and patient based.

Objectives: To conduct a consultation with the community of individuals impacted by neurodevelopmental disorders particularly Autism Spectrum Disorders (ASD) to better understand critical issues that the community might identify as priorities for research. 

Methods:  This research consisted of a 30 question survey, the aim was to collect both quantitative and qualitative responses from a significant number of parents. The survey was divided into several categories including; background, research priorities and motivations and barriers to research. A number of question types were utilised e.g Likert scale, multiple choice and answer boxes. The survey was distributed via www.surveymonkey.com, to parent advocacy groups and parent groups all over Ireland. 

Results: 260 parents successfully completed the survey. 80% of Participants were parents of people with ASDs. Of all participants 33% said they had been approached to take part in research before and 22% of this group had taken part. The types of research that these participants took part in were mostly surveys (56%) and Interview Assessments (33%), with only one participant having taken part in a drug trial. The main research priorities for participants are development of services for adults and development of therapies/programs that aid day to day life (>90% Very Important). Development of methods for earlier/easier diagnosis was also deemed to a priority for research with (83% Very Important). Development of medicines is showing to be of least priority for parents. Parents indicated that if a therapeutic intervention was offered as part of the research” they would be more motivated to participate. Parents also reported that factors such as the location of the research centre and likelihood of causing distress to their child as reasons for them not to participate. 

Conclusions: This research is particularly novel and timely due to the fact that there is very little research, which involves investigating research priorities for people who are affected by intellectual and developmental disabilities day to day. It was notable that only 22% of the people approached to take part in research ultimately participated. At a minimum this illustrates that researchers are challenged to communicate adequately regarding research methods to alleviate these concerns where these are unfounded. The survey clearly illustrated that parents prioritised clinical services research and interventions over basic scientific questions. Development of medicines was consistently reported to be of least importance to parents. Utilising the information gained from this research correctly may help to create a more friendly research environment which could increase research participation, develop research studies that aim to meet the needs of affected individuals and create more balanced allocation of research funding.