UCSD Autism Center of Excellence: SPARK Study

Hannah Kaplan
SPARK Research Coordinator
UCSD Autism Center of Excellence


Hannah Kaplan
SPARK Site-Coordinator 
858-534-6906
www.sparkforautism.org/ucsd.sarrc
h1kaplan@ucsd.edu

Our center is currently a part of a large autism research study called SPARK that includes both biological parents and child diagnosed with ASD. SPARK seeks to speed up autism research and improve our understanding of autism. This includes learning what causes autism and how best to treat it. Our goal is to build a community of 50,000 individuals with autism and their biological family members. 

Our Goal:  SPARK seeks to speed up research and improve our understanding of autism.  This includes learning what causes autism and how best to treat it. UCSD ACE and over 20 of the nation’s leading medical schools and autism research centers are part of this effort.

What We Do:  SPARK researchers study genes and information collected from thousands of people with autism and, if possible, their parents.  We hope you will join us!

How To Join

  • Sign-up online at www.sparkforautism.org/ucsd.sarrc. It only takes about 20 minutes.
  • Complete a few questionnaires online.
  • Provide a saliva sample. We will send a small saliva collection kit to your home. When you are done, simply mail it back to us for free. 
  • *If you are promoted with: “Were you referred by a university, hospital, or registry?” Please select UCSD SARRC!*


There is no cost to take part in SPARK. The research is sponsored by the Simons Foundation Autism Research Initiative (SFARI). If you have any questions about the study, let me know and I would be more than happy to discuss them either by email or phone. You can respond to this email or call Hannah Kaplan directly at (858)-534-6906.

The Fever Effect: Do kids with autism do better when they use a device to warm their blood?
Effects of a 6-week AVACEN Treatment Method on Autism Spectrum Disorder

Frances Poteet

484-949-5275

Study Start Date:  8/15/2018

Study End Date:  3/15/2019

Participants will be between the ages of 6 years of age and 16 years of age inclusive, with IQ over 70, and diagnosed with Autism Spectrum Disorder.

Abstract:   This is a prospective study to examine the effect of the AVACEN Treatment Method (ATM) on symptomatology of individuals with Autism Spectrum Disorder after a 6-week trial. 12 participants will be enrolled in three separate matched groups (4 per group). Three different conditions will be present; a standard AVACEN Treatment Method (ATM), a Heat Only Control, (HOC) (108F heat, zero negative pressure, motor running to inflate the cuff, and a Body Temperature Control (BTC), (98.6F heat, zero negative pressure, motor running to inflate the cuff). Participants families will be randomly assigned to a group. All participants will undergo a trial with the device, as well as complete a Parent Stress Index (PSI-4) and a Childhood Autism Rating Scale (CARS-2) before treatment as a baseline, at 3 weeks and after intervention period. Participants will then have a 6-week intervention period with one of the three conditions consisting of a twice a day 20-minute treatment. Parents will also spend approximately 10 minutes a day completing the Parent Log; 5 minutes per session during intervention period.  The time that the child will spend in the study will be 20 minutes twice a day for six weeks, the total number of hours parents will spend before and after the study will be up to two hours to complete the assessments and parent logs. While the usual AVACEN Treatment Method utilizes 15 minutes twice a day, it is our opinion as research team that 20 minutes is more likely to be effective.


Click here to download study information.


Attention Differences in Persons with ASD and their Family Members

Alan Lincoln, Ph.D., MSCP, BCBA-D and Shamayne Brown, M.A. 

Neuroscience Center of Alliant International University

858-635-4068

sbrown7@alliant.edu or alincoln@alliant.edu

Participate in Research: Attention Differences in Boys with ASD and their Family Members

Boys with ASD between the ages of 8 and 16 and BOTH of their biological parents are invited to participate in a study examining attention skills and genetics.

Boys who are typically developing and their biological parents are also invited to serve as a control group.

This research taking place at the Neuroscience Center of Alliant International University under the supervision of Alan Lincoln, Ph.D., MSCP, BCBA-D and Shamayne Brown, M.A. You must be able to travel to the lab.

Study Requirements:
•       Both biological parents and son must participate.
•       Each parent will complete questionnaires about him or herself. This should take about 30 minutes.
•       Each parent will complete a brief standard cognitive measure. This should take about 30 minutes.
•       Each parent will complete a complete a customer task. This should take about 30 minutes.
•       One parent will complete questionnaires about your son. This should take about 25 minutes.
•       Your son will complete the brief standard cognitive measure. This should take about 30 minutes.
•       Your son will complete the computer task. This should take about 30 minutes.

Upon the completion of participation in this study, your son will receive a $20.00 cash gift and each parent will each receive a $10 gift card. You may also receive, upon request, results of your performance and/or your child’s performance.

Refer another family to the study and be entered in a drawing for a $200 Visa gift card.

If you are interested in participating, please contact us at 858-635-4068, or by email: sbrown7@alliant.edu or alincoln@alliant.edu

Parent Survey for Children with Autism and Other Developmental Disabilities
Interactive Media Institute

http://interactivemediainstitute.com/wordpress/
iantmiller94@gmail.com

This is an informal, 3 question survey for parents of children with developmental disabilities. It does not collect any identifying information about the respondents or their children. Thus, an IRB is not required. We would like to obtain a list of difficult daily contexts for these children to later inform a research study (which is currently under review by an IRB). The link to the online survey is below. We would greatly appreciate this being posted on your Facebook page and/or website. I am happy to provide a short message to accompany the survey link on any posts. https://www.surveymonkey.com/r/6X36RYH


An examination of parents’ retrospective treatment decisions for their child with ASD
Jennifer Vetter, M.S.

autism@binghamton.edu

607-777-2829

Website: https://www.surveymonkey.com/r/treatmentsforautism

Study Start Date:  Jan 1, 2018

Study End Date:  Jan 1, 2019

Researchers at Binghamton University are looking for parents of children with ASD to take an online survey about how they view themselves and make decisions. Parents will also be asked about their experience with specific treatments used for their child's diagnosis. This study has been approved by the Institutional Review Board (IRB). The survey will take approximately 30 minutes to complete, and participants may choose to be entered into a drawing that will award $50 to each of five participants.


IRB Modification Approval

Informed Consent

Abstract


Development and Refinement of a Caregiver-Completed Quality of Life Measure
Arek Yetenekian, M.A

ayetenekian@alliant.edu

818-406-5199

Website:  https://newqtrial2015az1.az1.qualtrics.com/jfe/form/SV_bq1Ye1UEEfFAuz3

Study Start Date:  Nov. 22, 2017

Study End Date:  Nov. 18, 2018


Parents or primary caregivers of non-communicative children with autism are needed for this study, and will be requested to complete the packet given via the provided URL. The study consists of several measures consisting of mostly multiple-choice responses related to a child's quality of life, as well as related areas of interest such as familial and parenting stress. Demographic information will also be collected. Participants with at least a fifth grade reading level, residing in the US, with at least one minor child with autism who is unable to communicate through oral and written means, are required.

Autism & Injury
Ariane Myers-Turnbull, MA

amyers-turnbull@alliant.edu


I am currently recruiting participants for a project that is examining why children with autism are injured more often than children without autism. To participate you must be a mother of a child who is between the ages of 3 and 7 years old and who has been diagnosed with an autism spectrum disorder (i.e. autism, Asperger’s, pervasive developmental disorder). 

Concludes 3/2/2018

Attentional Blink on fovea vs. periphery
Dr. Jaime Pineda

v5rodrig@ucsd.edu

(858) 534-7087

Website:  http://bci.ucsd.edu/Home.html

Study Start Date:  Sep. 1, 2017

Study End Date:  Aug. 31, 2018

This study is looking at the visual and attentional abilities of adolescents with autism compared to typically developing adolescents. We are focusing on adolescence around (10-17 years of age). The study will take less than 2 hours, and the participants will be compensated $40 for the time.

The Autistic Brain Over 45: The Anatomic, Functional, and Cognitive Phenotype - 1

Ralph-Axel Müller, Ph.D. & Ruth Carper, Ph.D.

(619) 594-0176

ASDAging@mail.sdsu.edu

http://www.sci.sdsu.edu/bdil/web/Adults_with_ASD.html

We’re looking for adults age 40 to 65 years who have Autism Spectrum Disorder or Asperger’s Syndrome to participate in a new research study in San Diego, California.

This project will fill a large gap in our current knowledge of ASD with virtually nothing known about brain and behavioral changes after age 40. Participants will take part in cognitive testing and an MRI scan. Volunteers must live in the San Diego area, be able to follow verbal instructions, and be able to hold still for an MRI scan. Participants will be paid for participating.

This project is conducted by Dr. Ralph-Axel Müller of San Diego State University through a grant from the National Institutes of Health.

Multimodal imaging of early neural signature in autism spectrum disorder

Inna Fishman, PhD; San Diego State University

619-594-2299

http://scan.sdsu.edu/

toddlermristudy@mail.sdsu.edu

Study Start Date: 9/1/2015
Study End Date: 12/30/2018

We are recruiting families with toddlers (18-24 month old) who had just received a diagnosis of Autism, or Autism Spectrum Disorder, to take part in the NIH-funded brain imaging studies. We will ask you to visit an MRI research center, where we can obtain images of your child's brain, while she or he is naturally asleep. The scans will take place late in the evenings when your child is usually asleep. It has been shown that kids can sleep successfully (and peacefully) in the MRI machine. Thus, while this method is completely non-invasive and safe, it can provide us with critical information about how your child's brain is developing at this critical period when autism symptoms first emerge. You will be compensated for your time and efforts. We will also ask you to return for a similar visit when your child is about 3 year old, and again when they are about 4-5 year old, for which you will also be compensated. 

Atypical Gaze Predictive of Later Autism Symptoms and Adaptive Functioning
Sarah Tuberman

sarah.tuberman@gmail.com

818-645-9028

Website: http://www.studyautism.com

Study Start Date:  Feb 1, 2018

Study End Date:  Oct 27, 2018

I am studying ways that children look at objects and their hands/fingers, and how these behaviors might be related to later autism symptoms and daily functioning. The purpose of the research is to learn if there are special ways that young children look at objects and their hands/fingers that might be linked to autism symptoms, and how they manage their everyday lives.

Participation in this study will take approximately 30 to 50 minutes to complete. Participants will have a chance to enter into an Opportunity Drawing to win one of eight $60 Amazon gift certificates for your participation.

Parents who have children with autism as well as parents who do not have children with autism are welcome to participate. Participants must be at least 18 years of age, have a child under 18 years of age, be able to read English, and live in the United States.

EEG/MEG Rhythms, Brain Computer Interfaces, and Cognition
Dr. Jaime Pineda

mvramire@ucsd.edu

951-591-9687

Website: http://www.studyautism.com

Study Start Date:  Sept. 1, 2017

Study End Date:  Aug. 31, 2018

Our study is looking at the attentional blink paradigm in high functioning Autistic children (10-17 years old). Autistic have a tendency to use their periphery much more regularly than normally functioning children. The study is directed toward discovering if their is a difference in the attentional blink paradigm in Autistic children because of their frequent use of the periphery. An EEG cap and eye tracking machine will be used in this study. The Participant Criteria are high functioning Autistic children between the ages of 10 -17 and controls will be normal functioning children between the ages of 10-17.


Download Related Documents

Postsecondary Resilience Education Program 

Rachel Hall

919-677-0102 ext. 514

hall@3cisd.com

https://www.prepasd.com/parents

Are you the parent of a child with a high functioning autism spectrum disorder (HF-ASD), Asperger’s syndrome, or Pervasive Developmental Disorder-NOS  who is a high school student preparing to transition to a post-secondary education setting such as a university or a community college within a few years?

Would you like to participate in the development of a computer-based program designed to help individuals with HF-ASD transition to college with improved success?

Click here to read more and apply.

Integrity and Dynamic Processing Efficiency of Networks in Autism Spectrum Disorder

Dr. Ralph-Axel Mueller

619-594-0176

bdil@mail.sdsu.edu

bdil.sdsu.edu

Study Start Date: 8/10/2014

Study End Date: 4/30/2019

​The goal of this study is to compare the brain development between children with ASD and typically developing children before, and during, adolescence. If you know a child who is 7 - 17 years old, and is typically developing OR has a diagnosis of ASD, they may be eligible for this study. Participation involves a diagnostic and cognitive assessment, an MRI scan, and possibly an MEG scan for children 12-17 years old. There is no sedation or medication involved. Families are generously compensated for all the visits (between 2 to 4 visits, over the course of several weeks). We also share an image of your child’s brain with you!

Social Participation and Quality of Life in Young Adults with Autism Spectrum Disorder 

Dr. Yan hua- Huang, Sabrina Setareh, Laura Silver, Ashley Wynne, Grace Yim, Lisa Yee

P: 310-243-2136
sabrinasetareh@yahoo.com

Click here for study approval document.

The purpose of this study is to explore the quality of life of young adults with high functioning ASD. While there are studies on quality of life on adults with ASD, these studies have been taken place in foreign countries such as Germany and Taiwan. The findings will be helpful due to the need for occupational therapists to improve interventions to improve social skills of young adults with ASD. This study will be confidential and no names or personal information will be asked. We are hoping to have a total of 70 participants who meet the following criteria:

1. Adults between ages 18-35 
2. Diagnosed with ASD
3. Able to legally consent for themselves 

Unstuck and on target

Andy Jin, 3C Research Assistant

(919) 677-0102 ext. 583

​jin@3cisd.com

http://unstuckontarget.com/study

Click here to download flyer.

Are you a parent of an 8-12 year old child with Autism Spectrum Disorder without an intellectual disability?  Does your child report experiencing problems with flexibility, planning, and/or organization?  If so, you may be eligible to participate in a research study to provide feedback on a software program for parents that provides advanced training on how to apply an evidence-based curriculum, Unstuck and On Target, at home.


If eligible and chosen to participate in the study, all participants will be asked to complete the following research activities online. These activities are expected to take approximately 2 hours and you’ll have 2 weeks to complete these activities. If participants complete the following research activities, they will receive a $75 Amazon gift code for their participation.

1.    Complete a survey of demographic information
2.    Access and complete tasks on the software prototype
3.    Review website examples of future software development
4.    Complete a product evaluation to provide feedback on the prototype and website examples.

Following the completion of the online research activities, we will ask you to participate in a brief phone call about your experiences with the prototype lasting no longer than 45 minutes.

In order to learn more about the study or to determine if you are eligible to participate in this study, please visit this link: http://unstuckontarget.com/study

If you have any questions about this research, please contact Andy Jin, 3C Research Assistant, via e-mail at jin@3cisd.com or via phone at (919) 677-0102 ext. 583.

Research is the key to improving our knowledge about possible causes of autism and helping to identify effective treatments. The following researchers are seeking participants to assist in their studies.

If you are seeking funding sources to conduct a study,
click here for more information about the Autism Society San Diego Bernard Rimland Memorial Research Grant.

If you are seeking participants for studies relating to ASD (must be IRB approved) and would like your information to be posted, please click here for submission guidelines.

Below is a list of researchers seeking participants for their studies.

Research Studies

Serving as the voice and resource to the San Diego autism community.