This listing is designed to provide information in regard to the subject matter covered. It is distributed as a public service by the National Down Syndrome Society with the understanding that the National Down Syndrome Society is not engaged in rendering medical or professional services. Individuals are strongly encouraged to speak with their physicians or clinicians regarding any questions they might have regarding the study. The National Down Syndrome Society makes no representation or endorsement to any of the information provided.
For more information, visit www.clinicaltrial.gov.
children between 7 and 12 WITH DOWN SYNDROME NEEDED for a research study on Obsessive-Compulsive Behaviors by queens college in new york
The purpose of this study is to evaluate whether a behavior analytic assessment and treatment package will help reduce oralleviate Obsessive-Compulsive Behaviors and teach them more appropriate alternatives among children and youth withDown Syndrome. Behavior analytic assessment and intervention has been shown to be helpful in reducing these behaviors for children with avariety of abilities and disabilities. This approach is based on the principle that learning takes place as a result of how theenvironment consequences the learner. For example, if a child engages in a behavior (reaches for a toy) and the toyactivates with a favorite song, it is likely that the child will continue to emit this response in the future. Assessment and Treatment will take place at Queens College and in family homes. We would meet with the family, identifythe goals, identify teaching strategies, and then teach you and the members of your child’s team how to implement theteaching strategies.
Throughout the intervention, your child’s progress will be carefully monitored so that at any time if therewere any changes that had to be made, the intervention would be adjusted so that your child’s behavior showed change.If you are interested in learning more about the study, please contact Nicole Neil at 718-813-7804, or email nneil@qc.cuny.edu.
Help explore the ethical, legal and social implications of new prenatal tests for Down syndrome with the Stanford University Forum on Biomedical Ethics
The INVEST forum is designed to help people deliberate over the ethical, legal and social impact of emerging technologies. A project of the Stanford Center for Integration of Research on Genetics and Ethics, the opinions you express in this forum will be used to make informed recommendations to technology developers, policy-makers, and regulators. The current scenario deals with a new technology for prenatal genetic testing.
To participate anonymously in the INVEST forum, visit our site at: investforum.stanford.edu.
Your contribution to this forum will help us advise technology developers, policy-makers, and regulators on new genetic technology for prenatal testing. Our Center is funded by the National Institutes of Health, and one of our goals is to develop mechanisms that enhance the incorporation of ethical, legal, and social considerations into research. To learn more about us, visit us at cirge.stanford.edu.
If you have further questions about the project, please contact Dr. Megan Allyse at megand@stanford.edu.
An Assessment of the Health, Social, and Daily Living Skills of Adults with Down Syndrome
Dear parent, family member, or caregiver of an adult (20 years of age or older) with Down syndrome:
Your participation is requested for a research study exploring the health, social, and daily living skills of adults with Down syndrome. Your participation will help increase knowledge pertaining to the capabilities of adults with Down syndrome. Additional knowledge in this area will help genetic counselors and other health care professionals gain a better understanding of this population’s abilities, thereby improving information provided to patients and families.
Study participation involves an online, anonymous survey that will take approximately 20 minutes to complete. Participation is voluntary and at any time you may choose to exit the survey.
Take the survey.
This survey is part of a Case Western Reserve University genetic counseling student’s Masters thesis and has received Institutional Review Board (IRB) approval. Please feel free to contact Theodora with any questions or comments.
Thank you very much for your time and consideration,
Theodora Jacobson
Genetic Counseling Graduate Student
Case Western Reserve University
taj8@case.edu
216-287-7481
Are you the female primary caregiver of a child with Down syndrome who has transitioned from school-based to adult-based services within the last 6 months?
Would you enjoy contributing to scientific knowledge about the stressfulness of this transition by completing an anonymous 40-minute survey?
For questions, please contact Deborah Wimer at 3174467931 or docustan@indy.rr.com.
Take the survey.
Employment Survey
There is currently no information available on employment and unemployment status for adults with Down syndrome. There is also no information describing where people work and the kinds of jobs they do. We all need that information in order to document the current situation and advocate for job training programs, funding, and more variety and choices in jobs.
The purpose of this survey is to begin to collect that information. The survey is designed to get information about adults with Down syndrome, ages 18-50 years old, whether they are working in paid or volunteer jobs, not currently working, or are in a training program to prepare for jobs. If you are one of those people, you can help us learn how to make jobs easier to find and to keep, and maybe even more fun to do. If you want to help, you can fill out the answers yourself, or you could get your parents or someone else to help you."
The survey will be online at Survey Monkey through December 31, 2011. Everyone’s response is important. Together we can make a difference!
Take the survey.
Libby Kumin
Loyola University Dept. of Speech-Language Pathology/Audiology
4501 North Charles Street
Baltimore, MD 21210
Research Study to Find Ways to Prevent Leukemia in Children with Down Syndrome
The Children’s Oncology Group (COG) is conducting a research study to find ways to prevent leukemia in children with Down syndrome. The COG study (named COG AAML08B1) aims to determine the biological causes of a blood disorder called, Transient Myeloproliferative Disease (TMD). TMD occurs in up to 10% of infants with Down syndrome; it is almost never seen in infants without Down syndrome. TMD is a leukemia-like disease that causes minor symptoms in most infants. It disappears spontaneously, without medications or chemotherapy, in most babies. TMD is a problem for two reasons: 1) it can cause severe symptoms and death in up to 20% of affected babies and 2) approximately one out of three TMD survivors will develop a type of childhood leukemia called, acute myeloid leukemia (AML). Severe forms of TMD and AML are curable, but they each require treatment with chemotherapy. By investigating differences in TMD biology, the Children’s Oncology Group aims to find ways to prevent TMD-related leukemia in children with Down syndrome.
The COG AAML08B1 TMD Biology Study is available at participating COG centers across the United States and abroad.
Survey about Menstruation (period) of Girls with Developmental Disabilities
Thank you so much for your interest in this study! Parents/Caretakers are invited to participate in a survey about the topic of Menstruation (period) of Girls with Developmental Disabilities. This survey is being conducted by Hye Ran Park, a doctoral candidate in special education at the University of Kansas.
What is the purpose of this study?
As you know, menstruation (period) is one of the puberty symptoms for every female regardless of whether or not a disability is present. However, there is little information or guidance for the parent or caretaker regarding the preparation of the young female with developmental disability for menstruation (periods) or about how to help her care for herself to whatever degree the young women can. Thus, your help and participation are needed in this survey in order to provide valuable information and support for families of females with developmental disabilities about menstruation (periods).
What does this study involve?
This study involves the completion of an online survey. If you agree to participate in this survey:
- You will follow the link to the SurveyMonkey website to find the survey
- This survey should take no longer than 30 minutes to complete
If you have any questions, please contact blueran@ku.edu.
Are you (or do you know) a biological father of a child with Down syndrome ages 3 or younger?
There is very little research on the unique perspectives of fathers of children with Down syndrome, while a great deal has been written about mothers. The needs and perspectives of men are often left out even though their experience often differs from women’s and are equally important. The web-based survey is available online and should take no longer than 30 minutes to complete.
Complete the survey.
To find out more about the study, or ask any questions, please email Laura Marshak or Courtney Williams at FathersStudy@gmail.com
Do you have a child between the age of 5 and 18 with Down syndrome?
If so, you are invited and encouraged to participate in a dissertation research study entitled: "Parent-Rated Strengths of Children and Adolescents with Down Syndrome". Your participation would involve completing a rating scale on your child's strengths, and a short questionnaire. It is anticipated that this will take you no longer than 15 minutes total. Your participation would be greatly appreciated. If you are interested and/or would like more information, please contact Nicole Keenan at nb614272@albany.edu
The Waisman Center at the University of Wisconsin-Madison is Seeking Adults with Down syndrome, Ages 30 and Above
For a research study involving an MRI and a PET scan to examine amyloid plaque in the brains of these individuals. Researcher Brad Christian, PhD, will look at the link between amyloid plaques and Down syndrome. Individuals with Down syndrome have an extra 21st chromosome, which contains the gene that makes these proteins and could lead to earlier development of Alzheimer’s disease.
The study takes two days, with the first day spent reviewing the procedures, completing a caregiver questionnaire, and neuropsychological testing for the individual with Down syndrome. On the second day brain imaging studies are performed, including an MRI that takes 30 minutes and a PET scan that takes an hour. There will also be a blood draw. You can find more information and watch a video that shows the imaging procedures on the following link: www.waisman.wisc.edu/amyloid.
Participants will receive compensation for time and expenses. There are some funds available for families who live a few hours from the Waisman Center to travel to Madison and have an overnight stay to allow the two study visits to be on consecutive days.
Please call Renee Makuch at 608-262-4717 or toll-free at 877-558-7595 for additional information. The Waisman Center is located at the University of Wisconsin-Madison, and this study is being conducted in collaboration with the University of Pittsburgh Medical Center and the Down Syndrome Center at Children’s Hospital of Pittsburgh.
Do you have an iPad, iPod, iPhone or other tablet device with communication app(s) for your child’s communication?
Are you thinking about such a device and communication software? Do you have a device but no communication software yet?
Complete the survey.
The information obtained will help speech-language pathologists better understand what kind of supports families need in making decisions and using this technology as an augmentative and alternative communication tool for individuals with communication challenges.
Alzheimer’s Disease in Adults with Down Syndrome
This project is designed to assess early diagnosis of Alzheimer’s disease in adults with Down syndrome. Persons with Down syndrome, 40 years and older, with no history of stroke, heart attack or cancer are encouraged to participate.
The study builds upon prior work at UCLA using Positron emission Tomography (PET), which identified abnormal functional patterns in the brains of memory-impaired research participants who later developed Alzheimer’s disease. This project aims to expand these findings to people with Down syndrome. Early identification of patients with memory impairment that progresses to Alzheimer’s disease is critical for identifying potential individuals who are most likely to benefit from treatments.
The PET procedures have the potential to clinically provide a safe, effective, and practical means of (1) early and presymptomatic diagnosis of AD, and (2) monitoring disease progression and efficacy of novel pharmacologic interventions. It may also facilitate understanding of the disease pathophysiology, which could lead to unraveling causes.
The two PET scans will be compared to determine which, if any, has better efficacy in early detection of AD. We will also use Magnetic Resonance Imaging (MRI) to measure brain structure changes, a neuropsychological assessment to determine cognitive performance, and blood samples to determine genetic markers of the disease.
Study procedures include:
- A one-hour medical evaluation,
- A two hour neuropsychological (or memory) evaluation,
- 1 blood draw,
- 2 PET scans,
- 1 MRI.
These procedures require two to three visits to the University of California Los Angeles (UCLA) with an accompanying caregiver who can serve as the person’s legal representative.
Participants will receive neuropsychological assessment and MRI results, and be compensated $150.00 for their time.
For more information, please contact Natacha Donoghue at 310-206-7392 or Jackie Martinez at 310-825-0545.
Do You Have a Child with Down Syndrome?
We are looking for parents of children with Down syndrome to complete a survey of their children’s language abilities and the speech-language services they have received. The web-based survey is available online and should take no longer than 30 minutes to complete.
To find out more about the study, please email or call Liza Finestack, Ph.D., CCC-SLP: finestack@umn.edu
Attention and Memory in People with Down Syndrome
Roche has initiated a Phase 1 clinical trial recruiting individuals with Down Syndrome aged 18 - 30 for a new medication that is being developed to improve attention and memory in people with Down Syndrome.
BP25543 is a multi-center, randomised, double-blind, placebo-controlled, multiple dose study to investigate the safety and tolerability of RG1662 in individuals with Down Syndrome.
For more information, please visit: www.clinicaltrials.gov
Research on Down Syndrome, Aging and Alzheimer’s Disease at the University of Kentucky Sanders-Brown Center on Aging
We invite adults with Down syndrome, age 35 and older, to participate in a 5 year study, funded by the National Institutes of Health and Eunice Kennedy Shriver National Institute of Child Health and Human Development. The goals of this project are to: (1) follow neurological, learning and memory changes in adults with Down syndrome as they age; (2) examine the brain changes using MRI; and (3) measure blood biomarkers. In combination, the study hopes to identify early markers of the development of Alzheimer’s disease in Down syndrome.
The participant and a family member or legal guardian will come to the University of Kentucky twice a year. The enrollment visit will take about six hours for the consent process, blood sample, memory and thinking assessments, physical examination, and brain MRI. Every 6 months the participant, accompanied by their guardian, will take tests that measure thinking skills, memory and a brain MRI, and these visits will take about three to four hours.
Volunteers will help us to better understand how memory and thinking change in people with Down syndrome as they get older and why they are at higher risk for Alzheimer’s disease. There will be no direct benefits for participating in the research. But participants may benefit from the medical examinations, blood tests and brain scans if they show a disease or illness that needs further treatment. If we find disease or illness, our study doctor will tell the guardian and the primary care doctor, so the participant can be treated. If you are interested in participating or have questions, please contact Roberta Davis, research coordinator, at 859-257-1412 ext. 479 or email rdavi3@email.uky.edu.
Inviting adults with Down syndrome who are 40 years of age or older to participate in a brain imaging study
The Institute for Neurodegenerative Disorders, an independent non-profit research institute based in New Haven, CT is inviting adults with Down syndrome who are 40 years of age or older to participate in a brain imaging study.
This study will help us develop a way of detecting Alzheimer disease before symptoms occur. Early detection of Alzheimer disease will allow us to use neuroprotective compounds, as they are developed, to stop progression of brain disease. We are planning to enroll adults 40 years of age or older who were born with Down syndrome. The participant should be accompanied by a family member or guardian. After completing a consenting process, the screening visit will involve a complete physical exam, including blood work and cardiogram. The results of the physical exam will be shared with the Participant. Following the physical exam an appointment will be made for the Participant to come to our office in New Haven for the brain scan with a Guardian. If needed, transportation will be provided. Participants who complete the study will be paid $400 for their time. If you are interested in participating or have questions, please contact Barbara Fussell RN, research nurse, at 800-401-6067 or bfussell@indd.org.
Volunteers Needed for Down Syndrome Study
This study is evaluating an investigational study drug to see if it can improve communication, understanding and the performance of daily living skills in children with Down Syndrome. As a qualified participant, your child will receive all study related procedures and study drug at no cost.
To qualify, your child must be:
- Between 10 and 18 years of age
- Diagnosed with Down Syndrome
- Able to see, hear, communicate and walk
Your child will be screened for communication, daily living and socialization skills and will need to fall within a certain range to qualify for study participation. You or a regular caregiver must accompany your child to each study visit.
If you are interested in more information, call Jane Ann McKillop at Duke University, 919-668-4576
Health of families who have children with and without Down syndrome: A Dissertation
I am working on my PhD, studying Kinesiology with emphasis in Adapted Physical Activity. Teaching children with disabilities to love being active is my passion and including their parents in this task is my life mission.
For my dissertation, I am interested in surveying parents who have multiple children, including one with Down syndrome related to the development of physical activity and eating habits within the family. In order to participate, you must be English speaking, above the age of 18 years, have multiple children (including 1 child with Down syndrome), and your children must currently live with you.
If you are interested in participating, or simply want more information about this study, follow this survey link.
The survey will take about 30 to 45 minutes of your time. If you have any questions, feel free to email Kelly Allums Featherston at kallums1@twu.edu.
Research on Social Communication Abilities of Young Children with Down Syndrome at the University of Louisville
We are conducting a study focused on the ability of young children who have Down syndrome to use other people to learn about new objects in their environment. We expect the findings from this research to provide insight into the early social and communicative development of children who have Down syndrome. In particular, the study will allow us both to examine children's use of other people as a source of information to learn about their environment during play and also to evaluate children's understanding of other people's communicative and affective behaviors. Children diagnosed with Down syndrome aged 3 years, 6 months to 5 years, 11 months may be eligible to participate. Participation in this study will involve a free 2-day developmental assessment examining your child's cognitive, linguistic, and social communicative abilities. In addition, you will complete a series of questionnaires and an interview about your child's day to day functioning. If your child participates in this study, you will be provided with a report describing the results of your child's assessment. If you wish to obtain more information about this project, please contact Angie John (a doctoral candidate under the supervision of the principal investigator, Carolyn B. Mervis, Ph.D.)
This research study has been approved by the University of Louisville Human Subjects Protection Program.
Email: aejohn11@louisville.edu
Telephone: 502-852-4638
Deptartment of Psychological and Brain Sciences, University of Louisville, Louisville, KY 40292
Adaptation and Resiliency in Families of Children with Down Syndrome
We are inviting you to take part in a research project that we are conducting with parents of children with Down syndrome. The purpose of the study is to learn about factors that influence how families respond following the birth of a child with Down syndrome.
Who can participate? If you are the parent of a child with Down syndrome, you are invited to participate. If you have a spouse or partner, he or she is also eligible to participate.
What will we ask you to do? We will ask you to complete an online questionnaire (this should take approximately 30-60 minutes) and speak with us on the phone (or in your home if you live in North Carolina).
We expect the phone call or in-person meeting will take approximately 60-90 minutes. After you complete the online questionnaire and talk with us either on the phone or in person we may contact you a second time if we need to clarify any information with you. If you are interested in completing the online questionnaire, but would rather not be interviewed, that is fine too.
To participate, please call (919-966-4284) or email vanriper@email.unc.edu.
The project has been approved by the institutional review board for human subjects research at the University of North Carolina at Chapel Hill. If you agree to take part, all information you give will be confidential. No-one except our research team will have access to your information.