*Note: the Impact Survey is now closed. Thanks to everyone who participated!
Members of the Autism Community, Kim Hollingsworth Taylor (an autism parent and the Clearly Present Founder and CEO) invites you to complete a quick, 10 minute ASD Impact Survey to help researchers by Wednesday, June 28.
She writes:
The Food and Drug Administration (FDA) has announced that it is gathering input from individuals on the autism spectrum and their families, focusing on what specific changes/outcomes are most important to them.
The result of this input will help researchers and industry to focus their efforts to develop therapies that will meet the highest-priority needs of people with Autism Spectrum Disorder (ASD).
The Clearly Present Foundation plans to submit a formal comment to the FDA. We have held a few small focus groups to gather input and received an enthusiastic response.
However, we would like to gather information from a broader array of individuals on the autism spectrum and their families.
We have partnered with Engage Health, Inc., a health research group, to develop a short online ASD Impact Survey to gather this information.
How Does the Survey Work?
To participate in the survey, click on this link, answer the questions, and click on “done” at the end to submit responses. If you are unable to reach the survey from the embedded link, you can copy/paste the full address into your browser bar:
http://www.engagehealth.com/survey/TakeSurvey.aspx?SurveyID=8l4Hnl4
The survey takes approximately 10 minutes to complete. The personal data required to register will remain confidential and will not be used for any other purpose.
How You Can Help
You can help us by sending information about this project to individuals on the autism spectrum and their families. Please encourage them to complete the short online survey and contribute their feedback.
You can also help by forwarding this letter to other ASD groups or organizations, so that they can spread the word about this opportunity to be heard.
The timing is tight. The survey will remain active through Wednesday, June 28 and then close to allow for composing and submitting the formal comments to the FDA by July 5th.
Confidentiality and Data Protection
The responses of all participants are confidential. Engage Health will remove identifying data (like name, contact information, and so on) from all responses, so that private information will not be available either to Clearly Present or to the FDA.
This “anonymized data” will be combined with responses from other patients and families, and form the basis of the formal comment from Clearly Present to the FDA. Prior to providing any information, each participant will sign an authorization and be able to review the confidentiality and data storage policies of Engage Health.
Because the information is anonymized, we will only know of your participation if you contact us separately! If you would like Clearly Present to recognize and thank you or your organization in our formal comments to the FDA, please let me know at KimHT@clearlypresent.org.
Clearly Present will provide a copy of the survey results to any survey participant on request.
Please help us in this effort to provide the FDA with accurate and meaningful feedback about what is important to people with ASD, which in turn will set directions for research and the development of therapies.
The mission of the Clearly Present Foundation is to accelerate the translational research and access to a breakthrough therapy for individuals with Autism Spectrum Disorder (ASD) using non-invasive brain stimulation to treat core symptoms. We are an all-volunteer group. Learn more at Clearly Present.
Kim Hollingsworth Taylor, Founder and CEO, Clearly Present Foundation
KimHT@Clearly-Present.org, 952-412-1567
