Research Studies looking for Participants

[Guest guest]

Dear Friend of ASO:

Information on Research studies looking for participants. FYI - please share.

- University of Cincinnati - Dept of Ed, Special Education

- NIH / s Hopkins University Study

Have you purchased your Ohio Autism Awareness License Plate yet? To purchase yours, visit www.oplates.com and click on "Specialty Plates" or visit our website at www.autismohio.org for more information. Part of the proceeds of plates purchased in the next three months will benefit your local ASA chapter!Sincerely,Barbara C. YavorcikPresidentAutism Society of Ohio701 S. Main St.Akron, OH 44311(330) 376-0211fax: (330) 376-1226email: askASO@...home: byavorcik@...web: www.autismohio.org Please note: This is provided for information purposes only. The ASO does not endorse or recommend any providers, methodologies or services. Providing this information should not be construed as an endorsement by the ASO, either explicit or impiled.

University of Cincinnati

Information about Participation in a Research Study

College of Education/ Department of Special Education

Karin Schumacher Dyke, M.Ed., M.S.

513-755-3727 (Schumaks@...)

Title of Study: Young Adults with Autism Transitioning to the World of Work: Comparisons of Parent Expectations and Community Realities

Dear Parent,

My name is Karin Schumacher Dyke. I am a doctoral student in special education at the University of Cincinnati. I am asking parents of young adults who at some point will switch from school into a job to take part in a research study that I am doing. Please read the following letter carefully and ask questions if something is unclear.

The reason for my study is to get an idea about what parents think about their young adults entering into the work world and then compare these views with what really happens in the community. You may choose not to be in the study or you may quit the study AT ANY TIME. You will receive nothing for being in this study. However, your voice will be heard and you may be helping people who work with young adults like your own.

Data collected from this study will be seen by only my advisor or me. Any data that I collect will be kept in a locked file cabinet. This information will not contain your name or other individually identifying information. Research data will be stored in a locked file cabinet for three years after the end of this study and then will be destroyed by shredding. The data from the study may be published; however, you will not be identified by name

If you would like to be in this study, you will be asked to answer some questions on a survey the internet. This should take you about 10-15 minutes to complete. I do not think you will have any pain or worry from answering these questions. None of the questions ask for sensitive personal information and you may choose not to answer any of the questions. There are no other activities planned if you do not want to be interviewed. You will not lose any of your legal rights by participating in this research study.

If you want to be a part of this study, please go to the internet link provided and click on the survey. BY ANSWERING THE QUESTIONS ON THIS SURVEY YOU ARE AGREEING TO HAVE YOUR ANSWERS USED IN THIS RESEARCH PROJECT. IF YOU CHOOSE TO COMPLETE THE SURVEY BY INTERNET here is your link:http://www.surveymonkey.com/s.asp?u=73542805120

I will not be able to tell who has taken this survey or be able to tell whose answers belong to whom for any of the questions. Data will be collected and compared with other anonymous participants of this survey.

If you have any questions about this study, you may call me at 755-3727 or Dr. Anne Bauer, my advisor at the University of Cincinnati, at 556 4537. If you have any questions about your rights for taking part in this study, you may call the Chair of the Institutional Review Board – Social and Behavioral Sciences at 558-5784.

PLEASE KEEP THIS INFORMATION SHEET IN CASE YOU HAVE ANY QUESTIONS.

Dear Parents,

I would like to invite you to participate in an exciting new research study that is being done by researchers at the National Institutes of Health (NIH) and s Hopkins University. I hope to hear from you soon!

Why is this study being done? To learn about how caregivers adjust to having a child with a PDD (Pervasive Developmental Disorder) including Autism, Asperger's Syndrome, Childhood Disintegrative Disorder, Rett's Disorder or Pervasive Developmental Disorder-Not Otherwise Specified.

Who can take part? Participants must be 18 years of age or older and must be the primary caregiver for a child with one of the following diagnoses: Autism, Asperger's Syndrome, Childhood Disintegrative Disorder, Rett's Disorder or Pervasive Developmental Disorder. Please complete only one survey per household. If your child has been diagnosed with a genetic condition in addition to one of the above diagnoses, you are not eligible to participate.

How do I take part? The survey can be done online by going to: www.surveymonkey.com/s.aspx?sm=FsPZpA5y82h7fVQtZLryKA_3d_3d and following the instructions on the website. If you would rather complete a paper version of the survey, contact Voss, at 1-866-585-7192 (Study #4) or vossk@..., to receive a copy of the survey and a stamped return envelope by mail. Any contact information you give the researchers so they can send you a survey will be destroyed after it is mailed to you.

What is involved in this study? Taking a survey that is about 30 minutes long. The survey asks for your thoughts and feelings about the experience of being a caregiver to your child.

What are the risks of the study? There are no known risks of taking part in this study. If it causes you to become upset or concerned about yourself or your child, please contact your doctor, or your child's primary care doctor.

Are there benefits to taking part in the study? There are not any personal benefits to you from taking part in this study. We hope to learn more about how caregivers adapt to having a child with a PDD and use that understanding to help other caregivers in the future.

Do I have to take part? You do not have to be part of this study if you do not want to.

I am very excited to learn more about your experience, and have been amazed by the parents I have met and heard from as a result of this project. This research would not be possible without your help, so thank you so much for your time and interest. I hope that you will take advantage of this chance to make your voice heard! I can’t wait to hear from you!

Thanks again!

Voss, B.S.

Associate Investigator

Genetic Counseling Training Program

s Hopkins School of Public Health/NIH

Toll Free Number: 1-866-585-7192, Study #4

vossk@...

Barbara B. Biesecker, MS, CGC

Primary Investigator

Genetic Counseling Training Program

NIH/NHGRIGet a sneak peek of the all-new AOL.com.