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.
COMMUNICATION STUDY IN CHILDREN WITH DOWN SYNDROME
If you have a son or daughter with Down syndrome ages 2-7, you and your child are invited to participate in a research study being conducted by Dr. Angela John Thurman at the Laboratory on Language Development in Neurodevelopmental Disorders at the MIND Institute, University of California, Davis and three other sites across the United States. Participants will also be seen at Colorado State University, Cincinnati Children’s Hospital Medical Center, and the University of Louisville.
The goal of this research study is to learn more about how samples of early communication and spoken language skills can be used to measure change over time in communication/spoken language, problem-solving, and behavior in individuals with Down syndrome. In the future, it is possible that measures of early communication skills may be useful as one way to learn whether different medications or behavioral interventions can help individuals with Down syndrome learn to use language more effectively.
If you are interested in participating in this study, you and your son or daughter will be asked to visit one of our study sites 3 times over a 1-year period. During these visits, your child will participate in a variety of activities to help us learn more about his or her communication skills and problem-solving abilities. Some of these activities will be more structured and some will be more play-based. We will also conduct some interviews with you and ask you to fill out some questionnaires to learn more about your child.
If you would like to learn more about this study, please call the Study Coordinator at 916-703-0226 or email: email@example.com
READING AND LANGUAGE DEVELOPMENT IN CHILDREN WITH DOWN SYNDROME
Researchers are seeking child participants for a 3-4 hour research study to help understand how children with Down syndrome learn important academic skills. Participants must:
- Be between the ages of 7-17 years old
- Have a diagnosis of Down syndrome
- Be native English speakers with English speaking parents
Participants will be compensated a total of $60 if all procedures are completed. Parents will also be compensated $20 to complete questionnaires.
This research is conducted by a researcher who is a member of Drexel University.If you are interested in this research study, please contact Dr.Nancy Raitano Lee at (215) 553-7164 or firstname.lastname@example.org
COMORBIDITY IN CHILDREN AND ADOLESCENTS WITH DOWN SYNDROME
We are currently seeking parents of children with Down syndrome to participate in a research study investigating comorbid symptoms in children with Down syndrome, and services accessed by families of children with Down syndrome. The purpose of this project is to characterize the additional medical and behavioral symptoms which children with Down syndrome experience, to assess their effects of on types of support services used by families, and to determine factors that influence these additional medical and behavioral symptoms among children with Down syndrome.
As participants in the project, you will be asked to complete online questionnaires taking approximately 45 minutes to complete. It is anonymous and will not capture IP addresses. The questionnaires will ask questions about you and your child, the medical and behavioral symptoms your child displays, and what services you access or have accessed for your child with Down syndrome. If you choose to participate, you may access our website:https://msucoe.az1.qualtrics.com/SE/?SID=SV_b40WLDdl91iAyhL
If you are interested in obtaining more information regarding this project, please contact Nicole Neil at via e-mail at email@example.com.
THE DIAGNOSIS EXPERIENCE OF HISPANIC PARENTS OF CHILDREN WITH DOWN SYNDROME
Studies have shown that people who speak Spanish or English as a second language have different experiences in medical settings compared to those who speak English. This project aims to study the satisfaction with the new diagnosis experiences in which a diagnosis of Down syndrome was explained to Hispanic parents of children with Down syndrome.
Participation is open to Hispanic parents of children with Down syndrome. The survey is available in both English and Spanish. This survey will ask about your experience with the first in-depth discussion of your child’s diagnosis of Down syndrome. This survey should take 15-20 minutes to complete.
Participation is voluntary and anonymous. Completion of the survey is considered your consent to participate. You will not be asked for any identifying information such as your name or your address. Your responses to the survey will not be linked to you in any way. If you start the survey you may stop at any time. You will not directly benefit from participating in this study. We hope information gained from this study will help doctors and genetic counselors provide better care to Hispanic families of children with Down syndrome.
Thank you in advance for your participation in this project. Your responses are greatly appreciated.
To begin the survey, please click the continue key below and follow the instructions.
- English link: https://www.surveymonkey.com/r/G8HM6LQ
- Spanish link:https://www.surveymonkey.com/r/35PBHGN
If you have any questions, do not hesitate to contact me at firstname.lastname@example.org. You may also contact Shannan Delany Dixon, the Principal Investigator of the study and the Program Director of the University of Maryland Master’s in Genetic Counseling Training Program, at email@example.com / 410-706-7413.
PARENT PERSPECTIVES ON RAPPORT IN SPEECH-LANGUAGE TREATMENT FOR CHILDREN
The purpose of this study is to explore parent perceptions of clinician-client relationships in speech-language treatment for children. We believe that the development of collaborative working relationships between speech-language pathologists, children receiving treatment, and their parents are important aspects of the treatment process. We are working to develop tools to accurately measure the strength of these relationships.
Interested participants should complete the following survey: https://www.surveymonkey.com/r/FKJC8GW
SHOULD INFANTS WITH DOWN SYNDROME BE SCREENED MORE FREQUENTLY FOR THYROID DYSFUNCTION?
The Division of Pediatric Endocrinology at the UMASS Memorial Children’s Medical Center is conducting a research study to determine whether infants with Down syndrome need to be screened at more frequent intervals during the first year of life for thyroid disorders
Thyroid hormone is critical for brain development in the first three years of life. Early diagnosis and treatment of thyroid disorders in all infants can optimize neurodevelopmental outcomes.
This study involves screening for thyroid disorders with either a heel, toe or finger stick blood sample at 2 and 4 weeks of age and monthly thereafter for the first 12 months of life. For convenience, these blood samples can be done at your pediatrician’s office. If your infant is diagnosed with a thyroid disorder then treatment will be started promptly.
- Newborn with Down syndrome (> 30 weeks gestation)
- Enroll < 6 months of age
Compensation provided for each visit.
If you are interested in learning more about this study please contact Penny Feldman, M.D. at 508-334-7575 or at firstname.lastname@example.org
SLEEP AND MENTAL HEALTH IN PERSONS WITH DOWN SYNDROME
This study hopes to characterize the cognitive, behavior and mental health conditions that appear to be associated with sleep disturbance in adolescents/adults with Down syndrome.
We are recruiting individuals between 18-35 years, with Down syndrome.
We are recruiting DS subjects with mental health concerns such as loss of functional skills, low motivation, depressed mood, social withdrawal and motor slowing
We are also recruiting DS subjects without mental health concerns or functional decline
We cannot accept DS subjects with aggressive, disruptive or non-compliant behaviors
All subjects will receive a comprehensive evaluation assessing general level of function, behavior and mental health, sleep quality, as well as body shape/proportion and dietary/nutritional status. This will include; a sleep study, collecting urine, saliva, and a morning blood sample for biochemical testing. The goal of the study is to improve our understanding of the relationship between sleep, stress, metabolism and mental health in persons with Down syndrome.
The study will take place at the Kennedy Krieger Institute and Johns Hopkins Clinical Research Center and requires one extended visit over a 2-3 day period, including 1 overnight visits at the Johns Hopkins Clinical Research Center. We will try our best to accommodate your schedule!
There are minimal risks and no direct medical benefits for participating. You will receive medical test results that may be of interest to you or your physician. A cash incentive is offered for your participation.
Join today! If you are interested in participating, please contact us!
George T. Capone, M.D. Crystal Thomas
Principal Investigator Research Coordinator
Director, Down Syndrome Clinic 443-923-9140
Kennedy Krieger Institute ThomasCr@kennedykrieger.org
Protocol # NA_00018279
GENETIC INFLUENCES ON LEARNING AND BEHAVIOR IN INDIVIDUALS WITH DOWN SYNDROME
The goals of the study are as follows:
- Measure cognition and behavior using tests optimized for people with Down syndrome
- Identify genetic contributions to cognition in Down syndrome
- Assess the suitability of the test battery as a “readout” for clinical trials
Individuals with Down syndrome, age 6-25 years are being sought to participate and will be asked to do the following:
- Complete 90-120 minutes of testing in one or two visits. Most tests will be done on a computer (similar to computer games) and testing may be coordinated with other visits to the Kennedy Krieger Institute
- For genetic analysis, provide a small blood sample (children) and a saliva sample (parents)
- Parents will be asked to complete questionnaires on medical history and their child’s behavior
Results will be combined with information from other sites, but no personal identifiers will be included in the shared data. De-identified data may also be included in a national research database as required by the granting agencies.
The study began in January, 2010 and will spend up to ten years to complete this study for the Down Syndrome Phenotype Project. There are no significant risks or direct medical benefits for participating in this study.
This is a multi-site study with many participating institutions, including: Johns Hopkins University and Kennedy Krieger Institute, Baltimore, MD. Emory University School of Medicine, Department of Human Genetics, Atlanta, GA.
Please contact us to participate or receive more information.
Michelle Frank-Crawford, MA Roger H. Reeves, Ph.D.
Department of Behavioral Psychology Department of Physiology
Kennedy Krieger Institute 725 N. Wolfe St.
707 N Broadway Johns Hopkins University School of Medicine
Baltimore, MD 21205 Baltimore, MD 21205
TEL 443-923-9344 TEL 410-955-6621
EVALUATION OF THE EFFICACY, TOLERABILITY AND SAFETY OF MEMANTINE HYDROCHLORIDE ON YOUNG ADULTS WITH DOWN SYNDROME
Phase II, Multicenter, Sixteen-Week, Randomized, Double Blind, Placebo-Controlled Evaluation of the Efficacy, Tolerability and Safety of Memantine Hydrochloride on Enhancing the Cognitive Abilities of Adolescents and Young Adults with Down Syndrome — Study Subjects Wanted
A team of medical doctors and psychologists at the Case Western Reserve University, University Hospitals, and the Cleveland Clinic is investigating the effects of memantine on individuals with Down syndrome who are between the ages 15 and 32. Memantine is a medication FDA-approved for the treatment of Alzheimer’s disease, but it is not approved for use in persons with Down syndrome. This study was designed to examine whether or not this medication is safe and if it can improve memory and learning skills in adolescents and young adults with Down syndrome.
This study requires the participant and his or her primary caregiver to complete five to seven outpatient visits to University Hospitals in Cleveland, Ohio. Psychological and medical tests will take place during the visits. The tests, medication, and medical care related to the study are provided free of charge. Parking will be validated, and mileage can be reimbursed for those traveling 20 miles or more to come to the study.
If you, or someone you know, would be interested and meet the following requirements:
- 15-32 years of age
- medically diagnosed with Down syndrome
- in good general health and not pregnant
- able to swallow medicine capsules (crushing of capsules will not be permitted)
- have a reliable caregiver or family member who agrees to come with the participant to all visits, provide information about the participant, and ensure compliance with the medication schedule
- know enough English to be capable of reliably completing study tests
The study Principal Investigator is Alberto Costa, MD, PhD
Department of Pediatrics, Division of Pediatric Neurology
Case Western Reserve University and University Hospitals
For more information, please call or E-mail the study coordinator, Ms. Melissa Stasko (216-844-7281, Melissa.Stasko@case.edu)
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 email@example.com
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 firstname.lastname@example.org 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).
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:
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
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.
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 firstname.lastname@example.org.
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 email@example.com.
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!
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 firstname.lastname@example.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 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 email@example.com.
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.
The Innovation Health Design Lab at the University of Deleware
We are conducting a study with people with Down Syndrome, age 5-18 years old and their family caregivers. The purpose of the study is to understand needs relating to dressing and clothing. Our goal is to create new clothing sizes and styles to provide more clothing options for these kids!
For our study, we are looking for participants (children aged 5-18 years old with Down Syndrome and their family caregivers) for an online survey, and potentially an in-person interview. We would like to reach as many people as possible to help serve this population.
To complete the survey, use this link- https://delaware.ca1.qualtrics.com/jfe/form/SV_3QasoJhDmqeaOYB