- CASDA knows these are unprecedented times for the disability community and wishes to support how we can building back better as a more coordinated sector emerging out of the COVID-19 crisis. To do so, CASDA is coordinating autism-related data modules and pan-disability data collection initiatives to help select meaningful indicators, mitigate duplication, and ensure that collected information leads to action.
We are curating a list of surveys for autistic people and their families as well as resources for researchers from our members in the research community. This list is not comprehensive and it has not been systematically reviewed.
If you think a resource is missing, please fill out this form to add to this page. For more information, email us at firstname.lastname@example.org. If you would also like to share your survey at an international level, visit the Global COVID-19 Childhood Disability Data Coordination page.
- Disability Data Coordination
- COVID-19 Resources Canada
- A Disability-Inclusive Response to COVID-19
- NIH – Open-Access Data and Computational Resources to Address COVID-19
- ISARIC – COVID-19 Clinical Research Resources
- The human rights of children with disabilities during health emergencies (paper)
- IAACD COVID-19 Task Force
Disability Data Coordination
McGill has helped create a network of researchers, students, and web developers who launched a national portal to help those involved in COVID-19 research and development locate human resources, reagents, equipment and information in a timely manner.
See if you can become a member of CanCOVID, an expert community of Canadian COVID-19 researchers, clinical collaborators, and healthcare stakeholders mandated by the Office of the Chief Science Advisor of Canada communicating over SLACK, an online platform. CanCOVID seeks to connect national research efforts in order to support collaboration, coordination, and communication between those working on projects related to COVID-19. The goal is to optimize our collective response to this public health crisis.
A human rights-based approach to disability is required to ensure that no one is left behind. The UN has written recommendations on the collections and availability of disaggregated data by disability, the use of internationally recognized methods, and tools such as those from the Washington Group and the WHO Model Disability Survey.
COVID-19 open-access data and computational resources are being provided by federal agencies, including NIH, public consortia, and private entities.
- Data resources to address COVID-19
- Computational resources to address COVID-19
- Supporting resources
The results in this report have been produced using data from the ISARIC COVID-19 database. The aim is to accelerate our collective understanding of COVID-19 to help improve patient care and inform public health policy. Huge thanks to our partners who are sharing data to this end. We welcome additional partners to collaborate in this effort.
- Clinical data collection
- Data management and hosting
This editorial, published in the journal of Developmental Medicine & Child Neurology (open-access), invites researchers and clinicians working in the field of pediatric disability to advocate for clear standards on inclusive humanitarian responses in our communities during the COVID-19 pandemic. It guides a rights-based approach for disability data coordination, interpretation and actions during the COVID-19 pandemic
The COVID-19 pandemic is causing major disruptions in service provision, participation, and overall well-being of people with disabilities and their families worldwide. As such, the International Alliance of Academies of Childhood Disability (IAACD) created a COVID-19 Task Force to understand the impact of COVID-19 and rapidly share strategies to optimize service provision around the world. The Task Force has launched the Global COVID-19 Childhood Disability Data Coordination initiative, to collect information about ongoing and completed surveys addressing the impact of COVID-19.
- You can read about this initiative here https://www.mackeith.co.uk/wp-content/uploads/2020/06/IAACD-COVID-19-LET.pdf
- If you would like to add a survey to this initiative please complete the form here: https://iaacd.net/iaacd-covid-19-task-force/surveys-subgroup-2/