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.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 25 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 once 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.
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 859-218-3865 or email firstname.lastname@example.org
Children with Language Impairment Study
As the parent of a child who has language disabilities you may have worries or opinions that are related to your child’s language learning needs. Dr. LaVae Hoffman at the University of Virginia is conducting research to identify parent concerns. The results of this research will help her develop ways to meet your needs.
Please share your thoughts by completing a short survey at https://www.surveymonkey.com/r/8JXFJHB. It will only take about 5 minutes to do the survey. The survey is confidential and your name will not be asked.
You may contact Dr. Hoffman at email@example.com if you have questions.
LaVae Hoffman, PhD., CCC-SLP
Associate Professor of Communication Disorders
University of Virginia
Access to Care Research Study
We are conducting a research study on access to clinical care/research for children with neurodevelopmental and genetic disorders. The purpose of this research is to understand how families of children with neurodevelopmental and genetic disorders obtain access to patient care and clinical research in order to optimize delivery of these resources to them.
The study consists of a short online survey. It is anonymous and will not capture IP addresses. It takes 5-10 minutes to complete. It is meant for parents/caretakers of affected children.
The PI for this study is Dr. Tanjala Gipson (Study Number IRB00066567).
To learn more about the study, please contact Siddharth Srivastava by email (firstname.lastname@example.org) or Tanjala Gipson (Gipson@kennedykrieger.org)
Interested participants can simply go to the following link to complete the survey:
Body Image Research study
The purpose of this research is to identify the specific body image issues that females with Down syndrome experience, as perceived by their primary caregiver. Additionally, researchers would like to create a program that improves body image of females with Down syndrome. To make this program most effective, researchers will be asking the caregivers which components this program should include.
Parents of individuals with Down syndrome will be recruited to participate in this study. Potential participants will be given a flyer briefly explaining to the research study letter and the option to choose to participate. The background questionnaire and consent form will take approximately 15 to 20 minutes to complete. The one-on-one interview will be scheduled at the participants’ convenience and will occur upon completion of the background questionnaire and will be 45 to 90 minutes in length. All interviews will be audio taped and then transcribed verbatim. The participants will be asked to review their verbatim transcript (member check) of their interview and return it to the researchers with any added or omitted information or clarification of researcher questions. Any added or omitted data should be mailed or e-mailed to one of the principle researchers. The data collected from this research will be locked in the Kinesiology and Physical Education office at Wilfrid Laurier University for five years.
If you are interested, please contact Sarah MacFarlane (email@example.com) or Bri Redquest (firstname.lastname@example.org)
THE DOWN SYNDROME METABOLIC HEALTH STUDY
The Down syndrome Metabolic Health Study is trying to learn more about how body composition relates to the risks of developing heart disease and type 2 diabetes in children and adolescents with Down syndrome. We are currently recruiting both individuals with Down syndrome, and typically developing individuals age 10-20.
The study involves one full-day research visit to The Children's Hospital of Philadelphia in Philadelphia, PA. During the research visit:
- Fasting blood and urine samples will be collected
- A physical exam will be done and body measurements will be taken
- An X-RAY and ultrasounds will be done
- You and your child will be guided through questionnaires
- Oral Glucose Tolerance Test will be done in children who are overweight only
This study also involved the following post-visit procedure:
- Wearing a physical activity armband (provided by the study) for 7 days
- A nutritionist contacting you 3 times to record what your child has eaten in the past day
For more information about our study, you can visit our website at www.research.chop.edu/programs/downsyndrome , or contact a research team member.
If you are interested in participating, please contact:
Divya Prasad Amber Lauff
Stud Coordinator Research Assistant
(267) 426-2778 (267)426-0299
Fathers of Children with Special Needs and Internet Use
- Are you the father of one or more children?
- Are you 18 years old or older?
- Is your child under the age of 18?
- Does your child have special needs? (e.g. ADHD, visual impairment, hearing impairment, hyperactivity, Aspergers, etc.)
Participate in a research study at the University of Michigan! We want to learn about how you use the Internet and social media sites. We hope to understand how we might better support children with special needs and their parents. Your participation will help us to better understand the lives of parents of children with special needs.
If you decide to participate, we will ask you to do in an interview with our research team. The interview will take about 45-60 minutes of your time. The interview can be conducted in person or over the telephone or Skype. Participating in any of our studies is completely voluntary. Even if you decide to participate now, you may change your mind and stop at any time.
For more information, please contact Dr. Sarita Yardi Schoenebeck, Ph.D by email at email@example.com or Tawfiq Ammari at firstname.lastname@example.org. More information about Dr. Schoenebeck is available on her website: http://yardi.people.si.umich.edu.
Study about Parents of Children with Down Syndrome
Researchers at Brigham Young University are looking for volunteers to take part in a study regarding respite care and family functioning in parents who have a child with Down syndrome. Participants in the study will be asked to complete a questionnaire either online or on paper. The questionnaire will take approximately 45-60 minutes. In appreciation for their time, participants will each receive a $25 gift card.
The survey can be accessed at http://education.byu.edu/down_syndrome_study.html. For more information about this study, or to volunteer for this study, please contact Dr. Tina Taylor Dyches of the Department of Counseling Psychology & Special Education at (801) 422-5045 or at email@example.com.
Study on parents' dreams and goals for their young adult sons and daughters with down syndrome
This study, which is being conducted by a graduate researcher at the University of South Carolina School of Medicine, is focused on parents’ dreams for their young adult children with Down syndrome and on the resources and supports they use to help their children achieve those dreams. One of the study's primary goals is to provide genetic counselors and other advocates more useful resources and recommendations for families with a child who has Down syndrome.
In order to participate, you must be the parent of an 18-29 year old with Down syndrome. This research consists of a confidential survey and an optional phone interview. The survey can be accessed using the following link: www.surveymonkey.com/s/goalsanddreams. If you are willing to discuss your answers further through a phone interview, please include your first name and phone number at the end of the survey so that researchers may contact you.
If you have any questions regarding this research, or if you would like to take the survey but do not have internet access, you may contact primary researcher Julianna Hudnall at Julianna.Hudnall@uscmed.sc.edu or at 903-388-3960.
The Prelude study will examine the effect of scylloinositol (ELND005) in patients with Down Syndrome. Patients with Down Syndrome have life-long increased levels of amyloid and myo-inositol, both of which can affect the health and function of neurons. Scyllo-inositiol has effects on both amyloid and myo-inositol that could have beneficial effects on cognition and behavior in Down Syndrome. Elan is initiating a study to evaluate the use of scyllo-inositiol in young adults with Down Syndrome. ELND005, an investigational product that has not been approved for use by FDA, will be administered as a pill for 4 weeks.
Currently, researchers are seeking young adults to enroll in the study. This study will require six clinic visits and two follow-up phone calls. Study procedures include physical examinations, blood draws, tests of thinking and a brain MRI.
If interested, please contact:
UCSD Adult Down Syndrome Program
STUDY ON SPOKEN LANGUAGE IN CHILDREN, ADOLESCENTS AND YOUNG ADULTS WITH DOWN SYNDROME
If you have a son or daughter with Down syndrome between 6 and 23 years of age, you and your child are invited to participate in a research study being conducted by Dr. Leonard Abbeduto at the MIND Institute University of California, Davis, and four other sites across the United States.
The goal of this study is to learn more about how samples of spoken language can be used to measure change over time in the spoken language, problem solving and behavior of individuals with genetic syndromes. In the future, it is possible that measures of spoken language production may be useful as one way to learn whether different drugs can help individuals with genetic syndromes to learn and use language more effectively.
If you decide that you and your son or daughter would like to be in this study, we will ask you to visit one of the study sites three times over two years in time. At each visit, we will collect a sample of your son or daughter’s speech as s/he interacts with an examiner in three different settings: a conversation, looking at a picture book and participating in a series of interactive activities with an examiner. We will also give your child some tests that will measure his/her problem solving skills and how much language s/he understands and produces. We will ask you to fill out some questionnaires and participate in an interview about your child’s everyday living skills.
If you would like to learn more about this study, please call the Study Coordinator at 916-703-0226 or email firstname.lastname@example.org.
identify and prioritize the needs of families who have a member with an intellectual disability
Greetings! My name is Ann Turnbull, and I am co-director of the Beach Center on Disability at the University of Kansas. My husband, Rud Turnbull, and I have worked over the last four decades in seeking to foster trusting family-professional partnerships. We had a son, Jay Turnbull, who experienced multiple disabilities and was, without a doubt, our greatest teacher. Very sadly, Jay died in 2009 at the age of 41. His impact and legacy continue to guide us as family advocates.
If you are the parent or primary caregiver of a son or daughter with an intellectual disability (ages birth-21), I invite you to join this research project. This research project involves the development of an international survey to identify and prioritize the needs of families who have a member with an intellectual disability. Through this research, I pledge my best efforts and the best efforts of our international team in using these results to increase public awareness about the need for family support.
Take the survey.
With heartfelt gratitude,
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 or alleviate 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 a variety of abilities and disabilities. This approach is based on the principle that learning takes place as a result of how the environment consequences the learner. For example, if a child engages in a behavior (reaches for a toy) and the toy activates 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 will meet with the family, identify the goals, identify teaching strategies, and then teach you and the members of your child’s team how to implement the teaching strategies.
Throughout the intervention, your child’s progress will be carefully monitored so that at any time if there are any changes that have to be made, the intervention will be adjusted so that your child’s behavior shows change. If you are interested in learning more about the study, please contact Nicole Neil at 718-813-7804 or email email@example.com.
Are you the mother of a child who has Down syndrome and who has finished school within the past two years?
We want to know how this transition was for you as a parent. We have an anonymous online survey where you can describe your personal experiences. We’d love to hear from you. If you want to talk to me, Deborah Wimer, my phone number is 317-446-7931, and my email address is firstname.lastname@example.org.
Take the 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 greater 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 between the ages of 18 and 50 years old who are working in paid or volunteer jobs, are 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 can get your parents or someone else to help you.
Everyone’s response is important. Together we can make a difference!
Take the survey.
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.
Click the following link for more information.
The Waisman Center at the University of Wisconsin-Madison is Seeking Adults with Down syndrome, Ages 30 and Above
This research study will use MRI and a PET scans 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 running 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 online.
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 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.
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 40 years and older who have Down syndrome and 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. They may also facilitate understanding of the disease pathophysiology, which could lead to unraveling causes.
Study procedures include:
- A one-hour medical evaluation
- A two hour neuropsychological (or memory) evaluation
- 1 blood draw
- 2 PET scans
- 1 MRI
The two PET scans will be compared to determine which, if either, 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.
The study 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 Liza Finestack, Ph.D., CCC-SLP at email@example.com.
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 drugs 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.
NIH-funded study of Congenital heart defect and down syndrome
We are inviting families of children with Down syndrome to participate in an NIH-funded study to identify genetic and environmental factors that increase the chance of congenital heart defects. This study will help us understand why some children with Down syndrome have heart defects while others do not.
We are planning to enroll 600 children born with Down syndrome and atrioventricular septal defect (AVSD), commonly called AV canal, and 600 children born with Down syndrome and without any structural heart defect. The children must be under 18 years old to participate. This is an expansion of previous studies started in 2001. If you have participated before, you will not need to enter this study again.
This study is a collaborative effort between Kennedy Krieger Institute and John Hopkins University, Emory University, Oregon Health & Science University and the Children's National Medical Center in Washington, D.C.
Parents will be asked to complete a telephone interview (30-45 minutes) about their pregnancies, reproductive histories, maternal health and family health factors. Additionally, parents will be asked to donate small saliva samples for DNA analysis. Adolescents will be asked to donate small blood samples and younger children will be asked to donate even smaller blood samples for DNA analysis. The blood samples can be drawn during a regular visit to one of the study sites or by arrangement with your primary care physician. We will ask to obtain those of your child's medical records that relate to their diagnosis (such as a karotype) and their heart status (such as an echocardiogram report). There are no direct medical benefits or significant risks for participating in the study.
If you are interested in participating or have questions about the study, please contact Charnan Koller, R.N., C.C.R.P. at 443-923-9131 or at firstname.lastname@example.org.
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 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 two 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.) at 502-852-4638 or email@example.com.
This research study has been approved by the University of Louisville Human Subjects Protection Program.
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.
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. We will ask you to complete an online questionnaire (30-60 minutes) and speak with us on the phone or in person (60-90 minutes).
After you complete the online questionnaire and speak with us 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 firstname.lastname@example.org.
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. Nobody outside of our research team will have access to your information.