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RTC-CL Self-Determination Educational Curriculum: Pilot Study

Thank you for your interest in participating in our pilot study. We are building off data from previous focus groups with families to develop an education program for family members that will help them better support the self-determination of their member with a disability. Self-determination involves people taking the degree of control they desire over those parts of their life that are important to them. The Institute has developed a program and would like to see if it helps people with disabilities and their family members.
If you are interested in helping the Institute, you will be asked to take part in a pilot study of a family- based self-determination education program. This pilot study will help us better understand if families think that the program we have developed will be useful to family members and people with disabilities. If you agree to take part in this study:
(1) You and your family will meet via online webinars once a week for approximately one hour with 3 to 4 other families over 4-6 weeks. During this time everyone will learn about self- determination and how to best support it;
(2) Before the focus groups start, you will be asked to complete a demographics questionnaire and a pretest questionnaire.
(3) When all focus groups are complete, you will be asked to complete a feasibility/usability questionnaire and a posttest. We are most interested in the following: (a) What you liked about the session and think you might find useful to your family; (b) What you did not like and do not think would useful; and (c) What you think should be changed;
Taking part in this study will take about 6-8 hours of your time over a period of about 4-6 weeks and is voluntary. You do not have take part and will not be paid for the help you provide. However, you will be assisting staff at the Institute to develop a better self-determination support program for families.
If you do not wish to take part in this study it will not affect your relationship with our organization or the University in any way. This is something you will be doing because you personally want to help the researchers, who are working to improve quality of life of people with intellectual disabilities.
If you would like to take part in this study, or need further information, please contact the people from the University listed below. They will answer any questions you might have and let you know the next steps if you decide to help them in their work.

CONTACTS:
Brian Abery, Ph.D., Project Director Phone: 612-327-3678
E-Mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

Renata Ticha, Ph.D.
Phone: 612-624-5776 E-Mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

ASD Sibling Study

We are looking for typically-developing siblings, between teh ages of 11 and 21, that can complete three online questionnaires about their relationship with their sibling with an autism spectrum disorder! For 5-10 minutes of your time, you have the chance to win a $50 Amazon gift card for completing the study!

To complete the study, please follow this link:

Parents of participants: https://loyola.co1.qualtrics.com/jfe/form/SV_eqBqPtyvzuckmvb

Adolescent Participants:  https://loyola.co1.qualtrics.com/jfe/form/SV_9GCCBXU7G0zRNyd/SV_9GCCBXU7G0zRNyd

For more information please contact Bridget Crippen, M.S., Loyoal University Maryland: This email address is being protected from spambots. You need JavaScript enabled to view it.

Adults with ASD Survey

Have you been diagnosed with an Autism Spectrum Disorder?  Do you want a chance to win Bose noise cancelling headphones AND a $15 gift card?

The ARC Lab at Clemson University is conducting a study about perceived object use. We are looking for participants who are 18 years or older and have been diagnosed with an Autism Spectrum Disorder to take our survey. The survey only takes 15-20 minutes to complete. By completing the survey and providing your contact information, you will be guaranteed a gift card worth $15 to Amazon. You will also be entered into a drawing to win a pair of Bose Quiet Comfort 25 Noise Cancelling Headphones (Retail Value: $299.99). Each valid response you provide will be counted as an additional entry into the drawing. If you have any questions about the study, please contact Dr. Jennifer Bisson at This email address is being protected from spambots. You need JavaScript enabled to view it..

We thank you for your participation.

Please visit the link below to begin the survey:

https://clemsonhealth.az1.qualtrics.com/jfe/form/SV_3Wp4bs3y0A8XgWx

ASD Services Survey

Do you serve or support someone with ASD? We would love your feedback regarding important supports for adults on the spectrum.
You are invited to complete a brief survey assessing current and needed supports and services for young adults with autism spectrum disorder (ASD) in our community. The survey will take you approximately 15-30 minutes to complete. Your responses will be used to inform local service providers of needed supports and services for young adults with ASD, and may potentially lead to the development and provision of these services within your community! Please click this link to complete the survey: https://redcap.ahc.umn.edu/surveys/?s=P798MDTMH3

Please feel free to share this survey link with other individuals, families or professionals who are part of the ASD community and would be willing to share their experiences and feedback on this topic.

Thank you for your consideration!

Study: Talking About a Diagnosis With a Child With ASD

Dear Parent,

We are asking for your help.

Parents of children with Autism Spectrum Disorders often struggle with the question of how and when to share information with their child about their diagnosis. As a Developmental Pediatrician caring for many patients with ASD, I have discovered there is very little research about parents’ disclosure of the diagnosis to their child.  Families as well as professionals would benefit from a systematic study looking at this issue. 

Cohen Children’s Medical Center of New York is conducting a major national study focused on parents’ perspectives and experiences related to sharing information about the diagnosis with their child with ASD.   If you are a parent of a child from 8 to 25 years of age who has been diagnosed with an Autism Spectrum Disorder (including Asperger’s Disorder or PDD), we would like your input.  We want to hear from those of you who have spoken to their child about their diagnosis as well as those who have not yet had this discussion.    

Please click on the link below to help other families by participating in this important research study: 

 

 

This link is to an anonymous on-line questionnaire inquiring about your experience.  The questionnaire will take about 15 minutes to complete. 

If enough families complete our questionnaire, we hope to:

  • Have the most representative study done to date based on a large national sample of respondents
  • Give voice collectively to the experiences of hundreds of families
  • Provide information to professionals so they can better support families in this process going forward

A few important re-assurances:

  • Anonymity: All responses are anonymous
  • IRB Status: Our study has been reviewed by the Institutional Review Board at Northwell Health and approved as an EXEMPT study.  (Letter of exemption available upon request.)
  • Conflicts of Interest: None
  • Outside Sponsors or Funding: None

We know this is a busy time of year for people and we appreciate your time and consideration.  A copy of our results will be offered to all families who complete the questionnaire.

Please click on the link below to help other families by participating in this important research study: 

 

 

Thank you in advance for your kind cooperation.

Alyson Gutman MD

Developmental & Behavioral Pediatrics
Steven & Alexandra Cohen Children's Medical Center of New York
New Hyde Park, NY

https://childrenshospital.northwell.edu

Office: 516 802-6100

This email address is being protected from spambots. You need JavaScript enabled to view it.

Assistant Professor of Pediatrics

Zucker School of Medicine at Hofstra/Northwell

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