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Creating an Interactive National Registry for ASD in China
National awareness of ASD in China has increased. However, resources for diagnosis and intervention are limited, with huge regional imbalances. Economically strong cities have good access to clinics for diagnosis and resourceful information, while under-diagnosis of ASD is ubiquitous in remote areas. Hence, there is poorly reliable data of ASD prevalence in mainland China today. Additionally, the lack of standard process for clinical data collection and the difficulty in recruitment for clinical trials are both major barriers to ASD research. Establishing a nationwide web-based registry for ASD in China will allow information from multiple participants to be collected in one system, and allow participants to be matched with research trials based on eligibility. Furthermore, the registry will collect longitudinal data, in a meaningful and systematic way, to provide valuable information for further understanding ASD natural outcomes and intervention effectiveness. A parent-centered registry system has been modeled on the Interactive Autism Network and designed with parents, clinicians, researchers, and Chinese advocacy organizations. Its mission is to share knowledge and accelerate ASD research domestically and internationally.
Objectives:
By linking families, clinicians, researchers, and advocates, this project aims to:
1. Describe demographic and phenotype data for ASD in China.
2. Address research questions of critical interest to scientists and families, by establishing the largest ASD registry for domestic and international studies.
3. Facilitate internet-based distance education and skill-training of families and professionals for intervention.
4. Create a nationwide unified longitudinal dataset for treatment and follow-up.
Methods:
The ASD registry in China is online in design with user-friendly and secure data input interfaces, consent processing, and standardized workflow for data entry both within medical facilities and by ASD individuals and families. The design will allow medical facilities to use their local Electronic Health Record System for patients' information. Special algorithms will be embedded to evaluate inte- and intra-questionnaire validity and sampling tests will be performed to validate ASD diagnosis. Target population matching services will be provided to researchers according to collaborative projects' needs.
Results:
Here we will report on stakeholder engagement, which will be a vital measure of the success of the registry. Parents will assist in the creation of an online community platform for resource sharing and mutual support amongst families, and between families/professionals. Clinicians will participate in creation of protocol, e.g. the design of the clinic data entry process, and development of baseline and longitudinal datasets. They will also help families by sharing knowledge and evidence-based research findings. Researchers will develop individual study protocols, and later participate in matching potential target populations, recruitment outreach and workflow automation. Participation of advocacy organizations has also been crucial also and includes fundraising and awareness activities. These organizations play an important role for ASD acceptance in the community, provide special education and training opportunities, and can help with policy proposals, dissemination of research results, and identification of family needs generated from our registry data.
Conclusions:
Developing an ASD registry in China has required well-integrated participation of all stakeholders in the community to promote engagement and ensure success.