Autism Spectrum Disorder (ASD) and Bipolar Disorder (BD) are the two most common severe mental disorders affecting children and adolescents. Few evidence-based treatments exist for either condition. Furthermore, response to treatment vanes widely between individuals - and no evidence exists to match individual children with specific treatments. Research to address these gaps - both to develop new treatments and to more effectively match individuals with treatments - will depend on identifying biomarkers or endophenotypes that can accurately identify more homogeneous subgroups of patients and genetically related family members. The main aim of this pilot is to identify the best ways to maximize biospecimen collection from children with mental health conditions. We plan to meet this goal by leveraging and extending our recent work in MHRN1 on the feasibility of biospecimen collection from families of children with Autism Spectrum Disorder (ASD). We will use a mixed methods approach to develop low-cost, tailored recruitment and consenting processes that specifically address concerns about participating in studies using biospecimens from children with mental health conditions and that are appropriate to large and diverse populations. Specific Aim 1: Using data from a feasibility study of biospecimen collection from the MHRN1 Autism Registry survey project, web survey data collected in MHRN1, and health system electronic medical record (EMR) data, we will examine the demographic and clinical characteristics of children and their families predicting successful recruitment of families to participate in biospecimen collection. Specific Aim 2: Explore knowledge, attitudes and beliefs about biobanking and perceived facilitators and barriers to biobank participation among parents of children with mental health conditions from diverse backgrounds using ethnographic/qualitative methods (interviews, focus^groups). Specific Aim 3: Using information gained from Aims 1 and 2, we will develop and pilot test tailored methods for recruiting and consenting children/adolescents with mental health conditions and their families into a biospecimen bank for future research. We will focus on testing low cost methods appropriate for large diverse populations such as the MHRN Autism Registry or other large health systems. Sub AimSa: Compare effectiveness of recruitment and consenting methods across two different pediatnc mental health conditions.
Interagency Autism Coordinating Committee (IACC)
Autism Research Database (AFD)
