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What studies are underway?
How do I register? Sharing your ASD Diagnosis Participate!
Through involvement with the Research Registry, individuals with an ASD and their families can take part in online research questionnaires, be contacted about new studies by ASD-CARC, and keep updated about findings by ASD-CARC's researchers. All information submitted to the Research Registry is secure, as stipulated by the ASD-CARC Privacy Policy. Once registered, there are many ways you can help with the research:
What Studies are Underway?
Genetics Study: we are studying families to identify genes important in ASD susceptibility and to understand specific characteristics and identify subgroups of ASDs;
There are two easy steps to the registration process. First you need to register online or by phone, fax, or email: Online: Complete our online registration form. This will take 5-10 minutes and requires giving your informed consent. You will also be asked about your immediate family members (names, dates of birth and diagnoses), how to contact you, and what types of studies you are interested in. Click here to complete our online registration form!
By Phone, Fax or Email: Phone (Confidential): Fax (Confidential): Email (Confidential): autism.research@queensu.ca Top of Page
Please note that the information in all diagnostic reports will remain strictly confidential and the reports are stored in locked cabinets within a secure area. Copies of diagnostic reports are very important; without them, we will not be able to include your results in our study as they validate our data by ensuring that all of our participants do have a diagnosis of ASD. We will email you to confirm that we have received your report. If for any reason you have not received an email confirming that we received the report, please follow-up with us before you login to take part in the studies and questionnaires. Once you are registered and have provided ASD-CARC with a copy of your Diagnostic Report(s), you can begin to participate in the research! Please Login to complete research questionnaires, join studies and update your information at any time. All information submitted remains strictly confidential. |
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Secondly we will need a confirmation of an ASD diagnosis for the individual with an ASD. Since we do not usually have an opportunity to see our research participants in person (and therefore cannot officially assess each individual for an ASD), we are asking families to share copies of their diagnostic reports with us by fax, email or by mail. We will be happy to send you a pre-paid postage envelope for within Canada or we can reimburse for postage outside of Canada. Emailed documents can be scanned and password protected and then sent with the password in a separate email if you prefer.