Daily Archives: March 11, 2010

Study about healthcare needs participants, and people to spread the word to recruit more participants.

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This post is about a study that we are doing at AASPIRE. We need people both to spread the word and to participate. For participants we need autistic people, nonautistic disabled people, and nonautistic nondisabled people. The following is the sample text I’ve been given, because otherwise I could not write a post about this at the moment.

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Hello. I am a community partner representing the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE). I am contacting you today to ask for your help in recruiting participants for a new Gateway study. The Gateway Project serves as a gateway to research committed to inclusion, respect, accessibility and relevance to the autistic community.

We have just launched a new Gateway study that I am really excited about. The study aims to better understand health care inequities, including barriers to receiving quality health care. We are comparing the healthcare experiences of autistic adults to those of non-autistic adults with and without disabilities. AASPIRE’s long-term goal is to improve healthcare access and quality for adults on the autistic spectrum.

How Can You Help? We hope that you will help us by getting the word out about our study. You can let people know about the new healthcare study by directing them to www.aaspire.org/projects.html. I have also attached flyers which you can download or post. If you prefer to receive hardcopies, contact Roberta Delaney at delaney.roberta@gmail.com.

Some Background about AASPIRE: AASPIRE is an academic-community partnership that brings together autistic self-advocates, researchers, and people who support autistic adults to develop and perform research projects relevant to the needs of autistic adults. You can learn more about AASPIRE at www.aaspire.org.

I have pasted copies of the text of our recruitment flyers below. Please let me know if you have any questions. Thanks so much for your help!

Please note that if you use the fliers you should not alter their text at all.

Links to PDF flyers for printing:

PDF Flyer (autistic)
PDF Flyer (other disability)
PDF Flyer (general)

The first flyer is our flier targeted at autistic people:

APPROVED: Dec. 18, 2009
Be Included in Autism Research
The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) and the Gernsbacher Lab believe in research WITH autistic adults, not just ABOUT autistic adults.

Together, we have created the Gateway Project, an online gateway to research that
* encourages the inclusion of autistic adults in matters that affect them;
* includes autistic adults as equal partners in research about autistic persons;
* answers research questions that are considered relevant by the autistic community;
* uses research findings to effect positive change for people on the autistic spectrum.

Gateway studies address topics such as well-being and problem-solving. A new AASPIRE Gateway study focuses on the healthcare experiences of autistic adults and adults with and without disabilities. AASPIRE expects to use the information learned from this study to improve healthcare.

To participate in the AASPIRE Healthcare Study and any of the Gateway studies:
1. Register for a Gateway account at the Gateway homepage http://thegatewayproject.org .
2. Take the online Gateway Survey. It will take about 20-40 minutes to complete.
3. Wait for email messages about further studies. You may be eligible for some studies and not for others. You will only receive email messages for studies for which you are eligible.
4. If you are eligible for the Healthcare Study and decide to participate, it will take about 40 minutes to complete.
5. After finishing each survey, you can enter a drawing for an Amazon.com gift certificate.

If you would like to learn more about AASPIRE or the Gateway Project, you can
Go to the Gateway home page at http://thegatewayproject.org .
Send an email to Dora Raymaker at dora@aaspireproject.org.
Make a telephone call to Dr. Christina Nicolaidis at 1-503-494-9602.

OHSU IRB #5580
Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University; Dora Raymaker, MS, Autistic Self Advocacy Network

Please pass this information along to your friends!

The second flier is our flier targeted at disabled people in general:

Participate in Disability Research
APPROVED: Dec. 18, 2009

The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) and the Gernsbacher Lab have created the Gateway Project. The project serves as a gateway for research that is committed to inclusion, respect, accessibility, and community relevance.

Several Gateway studies may interest people with disabilities. A new AASPIRE Gateway study focuses on the healthcare experiences of
* adults on the autistic spectrum,
* non-autistic adults with disabilities, and
* non-autistic adults without disabilities.

AASPIRE expects to use the information learned from this study to improve healthcare.

To participate in the AASPIRE Healthcare Study and any of the Gateway studies:
1. Register for a Gateway account at the Gateway homepage http://thegatewayproject.org .
2. Take the online Gateway Survey. It will take about 20-40 minutes to complete.
3. Wait for email messages about further studies. You may be eligible for some studies and not for others. You will only receive email messages for studies for which you are eligible.
4. If you are eligible for the Healthcare Study and decide to participate, it will take about 40 minutes to complete.
5. After finishing each survey, you can enter a drawing for an Amazon.com gift certificate.

If you would like to learn more about AASPIRE or the Gateway Project, you can
Go to the Gateway home page at http://thegatewayproject.org .
Send an email to Dora Raymaker at dora@aaspireproject.org.
Make a telephone call to Dr. Christina Nicolaidis at 1-503-494-9602.

OHSU IRB #5580
Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University;
Dora Raymaker, MS, Autistic Self Advocacy Network

Please pass this information along to your friends!

Also, here are some sample tweets or Facebook entries that you can use (although on a personal level I confess near-total confusion as to how either of those things work):

* New Gateway Study about Healthcare. See http://www.aaspire.org/projects.html. Participate in research with autistics, not just about autistics!

* I am so excited about our new Gateway Study about Healthcare. Please participate! More info at http://www.aaspire.org/projects.html.

* AASPIRE has launched a new Gateway Study about healthcare inequities. Please participate. See http://www.aaspire.org/projects.html