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Important Links and Documents
The MDSC is dedicated to ensuring that all members have information about and access to the latest research opportunities.
Through working directly with researchers and scientists, the MDSC Medical and Scientific Advisory Council selects a number of studies each year that will be made available for the MDSC members to participate in if they so choose.
Each research proposal received is carefully reviewed for content, ethics, and feasibility before forwarding the information onto our members. If approved, the MDSC will develop a study dissemination plan in partnership with the researcher. The MDSC is sensitive to the confidential nature of our membership information and at no time does the MDSC sell or share member information with researchers.
If you are seeking participants for a research project that you would like the MDSC Medical and Scientific Advisory Council to consider, you can submit the proposal that includes the full study and IRB approval to email@example.com.
See this document for complete information on the kinds of research projects the MDSC has supported, the kinds of supports the MDSC can provide and detailed cost guidelines.
Current Opportunities for Participation in Research Studies
Evaluating the “Family-Centered” Approach of Pediatric Multidisciplinary Down Syndrome Clinics: A Parent’s Perspective
Devon Haynes, a graduate student in the genetic counseling program at the University of South Carolina School of Medicine, is conducting a research study to ascertain the level of psychosocial support offered to families of pediatric patients with Down syndrome by their health care providers. This research study looks at parent’s perspectives on the support given to their family through their child’s pediatric health care. The study involves taking a survey that is online and is meant to be filled out individually by either parent.
The survey contains a series of questions about your child with Down syndrome (under age 21) and the types of medical providers he/she sees on a regular basis. The survey also asks about opinions and perspectives on the level of psychosocial/emotional support that is offered by your child’s pediatric health care providers.
All responses from the surveys will be kept anonymous and confidential. The goal of the study is to collect information which will allow health care providers to provide more "family-centered" and psychosocial care to families affected by Down syndrome and other genetic conditions.
To take the survey, go to https://www.surveymonkey.com/s/psdsparentperspective.
Project Play seeks to evaluate children’s play as a developmental process across the age span of 8 months to 5 years.
Karin Lifter, Ph.D. and her research team from the Department of Counseling and Applied Educational Psychology at Northeastern University are currently looking for families who live in the Boston metropolitan area and who have a child who is developing with a delay. Their goal is to develop a user-friendly instrument that teachers and providers can use to evaluate a child’s progress in play, and particularly for children with delays and disabilities. The ultimate goal of their instrument is to be able to evaluate children’s play for the purposes of designing interventions for them.
Genetic disorders in children: An assessment of parental coping strategies and positive growth.
Jane Goodwin of the University of Newcastle (Australia) is conducting a research study for parents of children diagnosed with neurogenetic conditions, including Down syndrome. The study, supervised by Dr. Linda Campbell from the School of Psychology and Dr. Tracy Dudding from the School of Medicine and Public Health, is about how your child has impacted the lives of parents and caregivers.
The researchers are interested in how parents/caregivers have coped, and how the resources that are available to them have helped or hindered the experience. The aim of this study is to gain a broader understanding of issues facing parents and caregivers to children with both diagnosed and undiagnosed disorders. The researchers hope that the results of the study may improve health care processes and models associated with these conditions.
Health U - Weight Loss Study for Teens with Intellectual Disability
Health U. is a weight loss study for overweight teens and young adults ages 15-22 who have an intellectual disability. The study is funded by the National Institute of Health (NIH) through the Shriver Center at UMass Medical School. Eligible participants will take part in a program that includes weekly to biweekly group and individual sessions focusing on losing weight through healthy eating and increasing physical activity in ways that are fun and achievable. Parents receive training on supportive behavioral techniques to encourage their son/daughter to meet nutrition and physical activity goals.
Sessions are 90 minutes, highly interactive, and led by nutritionists and lifestyle coaches.
Health U. is a free and voluntary research study funded by the National Institute of Health (NIH) through the Shriver Center in Boston and at UMass Medical School. Qualified participants may be eligible for compensation.
Children's Mealtime Study Looking for Children Ages 3 - 8
The Children’s Mealtime Study, located at the E.K. Shriver Center/UMass Medical School, is looking for children with Down syndrome, Fragile X, and/or other intellectual disabilities ages 3-8 to participate in a research study on children’s eating patterns, mealtime behaviors, and parent feeding practices.
The study involves one 2-3 hour visit at a UMass Medical School-affiliated site and parents complete a 3-day food record at home. Parents will receive up to $85 compensation in the form of a gift cards; children will receive a $15 gift card for their participation.
For more information visit http://umassmed.edu/shriver/recruit/Childrens-Mealtime.aspx, or contact Alyssa: Phone: 774-455-6521 or Email: Mealtimes@umassmed.edu.
Prenatal MRI Study of Fetuses with Down Syndrome
The Mother Infant Research Institute at Tufts Medical Center is conducting a fetal brain imaging study to help understand more about brain development in fetuses with Down syndrome in ongoing pregnancies.
This study uses a safe, non-invasive MRI scan to look at the fetal brain. MRI studies make high-resolution pictures of the fetal brain.
To be eligible to participate in the study, you must have received a prenatal diagnosis of Down syndrome or have had a fetal DNA test result that is strongly suspiciaous of Down syndrome. Click here for a flier or contact Dr. Tomo Tarui at firstname.lastname@example.org or 617-636-5729 for more information.
The main purpose of this study is to understand the ways parents conceptualize career development for youth with moderate to severe disabilities in middle and high school. Researchers are looking for 30 parents to participate in a face-to-face interview. The interview will last no more than 60 minute and will be audio recorded. Researchers are interested in learning how families are preparing for their child’s transition from high school such as sources of support, career expectations, and career opportunities for their children, and challengesthey and their children face.
The research team is from the School of Education at Boston University, working under the the direction of Dr. V. Scott Solberg, and is supported by the Office of Disability Employment Policy in the United States Department of Labor (ODEP) and National Collaborative on Workforce and Disability for Youth (NCWD-Y).
Adolescents with Down syndrome experience puberty at the same time as their typical peers, yet often require more help from their families in understanding their changing bodies and navigating romantic relationships. Lillian Torrey, a graduate genetic counseling student at Boston University, is conducting the study to investigate fathers’ roles in disseminating sexual health information to their children with Down syndrome.
Study objectives are to better understand when and how this dialogue is initiated, the resources fathers utilize to inform these conversations, and the concerns, challenges and experiential advice fathers wish to share with other fathers. Personal phone interviews will be conducted with fathers of children with Down syndrome who are between the ages of 16 and 30 years old. This exploratory pilot study hopes to lay the foundation for larger studies investigating paternal communication strategies in disseminating sexual health information to their children with intellectual disabilities.
If you would like to participate, or learn more about the study, please contact Lillian Torrey at 617-549-9356 or email@example.com.
Project TEAM Study Looking for Teens and Young Adults Ages 14 - 21 with Developmental Disabilities
Project Team (Teens making Environment and Activity Modifications) is looking for teens and young adults ages 14- 21 with developmental or intellectual disabilities.
Young people and their parents will complete questionnaires and assessments about the physical and social environment, the activities they do, and how they feel about themselves.
Questionnaires will be completed three times over four months. After the first meeting, each participant will receive a $50 gift certificate to try a new activity, like going to the movies or a restaurant. Participants will also receive gift certificates when they and their parents complete the questionnaires: $25 after the second session and $30 after the third session.
Dr. Brian Skotko and his research team from the MassGeneral Hospital Down Syndrome Program are starting another study drug trial. In this clinical trial, an investigational medicine, not yet approved for sale by the FDA, will be studied in people with Down syndrome who meet eligibility criteria. This study drug is hoped to improve the cognitive capacities in some people with Down syndrome.
Up until now, opportunities for people with Down syndrome to participate in research have been scant, for a variety of reasons. For the first time, study drug trials are now available to people with Down syndrome. Enhancing the well-being of all people with Down syndrome remains the greatest aim of all of the research opportunities that we offer through the Mass General Hospital Down Syndrome Program.
There are a limited number of spots for this clinical trial, and eligible patients are screened in the order in which they contact us.
This study is being funded by Elan, the developer of the drug in the upcoming study. The upcoming clinical trial will evaluate the safety of the study drug and how it works in the body. The study will take place over 10 weeks and will include 5 clinic visits.
To see if your family member is eligible to take part in the study, please review the questions here: www.massgeneral.org/downsyndromeresearch.
If you would like your family member to participate in this study, or if you have further questions, please contact Mary Ellen McDonough, RN, Senior Clinical research Coordinator in the MassGeneral Hospital Down Syndrome program at, 617-643-5571 or firstname.lastname@example.org.
Children and adolescents, ages 5-18 years, with Down syndrome are being recruited to participate in a new study looking at reading comprehension abilities.
The study requires an interactive reading assessment conducted online with parent assistance and lasting approximately 45-60 minutes. Children will be asked to read words and stories, listen to stories, and to answer questions based on the reading and listening. An additional 20-30 minute parent interview is required to obtain basic information about the child’s literacy experiences and to test the online assessment process.
There is no charge to participate, and you will receive a written report describing your child’s relative strengths and instructional needs in reading along with recommendations for free and inexpensive methods and resources for supporting literacy learning.
If you are interested in participating, please contact Dr. David Koppenhaver at Appalachian State University by email (email@example.com), Skype (dave.litdis), or telephone (828-262-6074).
Please provide your email address and indicate that you are interested in participating in the “Down Syndrome Reading” study.
The relationship between use of manual sign before spoken language skills develop and literacy acquisition.
Carrie Ormsby is a graduate student in Speech-Language Pathology at Idaho State University, and the mother of a 10 year old daughter who has Down syndrome. Her research concerns children with Down syndrome who are currently attending 3rd-6th grades. It consists of a survey concerning children's reading and language.
Before taking the survey, you will need to have on hand your child’s most recent IQ score as well as most recent reading score. These scores can be obtained from your child’s special educator.
The survey should take no more than 20 minutes of your time. The survey will be open until May 31, 2013. You will find the survey on this link:
If you have any questions, please contact Carrie at firstname.lastname@example.org.
Research Study of Siblings and Disabilities
Doctoral student Mamta Saxena, MS of the University of Connecticut is conducting survey that looks at empowerment, thoughts and beliefs, and mood among adult siblings of individuals with intellectual and developmental disabilities.
Participation in this study can help in understanding needs of adult siblings who provide any form of care and support to their brothers or sisters with intellectual disabilities. Four lucky winners will receive $50 Sears gift cards!
Participants must be 18 years or older and live in the United States and must provide care and/or support to a brother or sister with a disability. (This can include everything from living with your sibling to driving them to the doctor, to talking on the phone and visiting.)
Go to https://www.surveymonkey.com/s/siblingcaregivers to take the survey.
This research is conducted under the direction of Dr. Anne F. Farrell, HDFS, University of Connecticut, Storrs, CT . If you need additional information about the study, please contact Dr. Farrell at email@example.com.
Birth to Three, then what?: Early Intervention’s role in the inclusion of children with Down syndrome.
The purpose of this study is to determine if the amount of therapy a child with Down syndrome receives, prior to entering school, has an impact on the type of schooling the child later attends and to what degree of inclusion they achieve.
Participation in this study should take 5-10 minutes, depending on your access to certain information. Having access to your child’s Individual Education Plan (IEP) and Individual Family Service Plan (IFSP) while completing this survey will decrease the amount of time spent in the survey and will improve the accuracy of your answers. It is not required that you have access to your child’s IEP or IFSP, but is highly recommended.
If you are interested in participating in this survey:
Click here for the Informed Consent Letter
Click here for the survey
Please email firstname.lastname@example.org if you have any questions.
Should Infants with Down Syndrome be Screened More Frequently
Thyroid hormone is important for brain development in all infants during the first three years of life. A delay in diagnosis and treatment of hypothyroidism, an underactive thyroid, can affect brain development. There is a higher incidence of hypothyroidism, an underactive thyroid, in infants with Down syndrome. Frequently, infants with Down syndrome have mild hypothyroidism which can only be detected by a blood test because symptoms are not present. Currently, the American Academy of Pediatrics recommends that thyroid function be checked in infants with Down syndrome at birth and at 6 and 12 months of age. This study is being conducted to determine whether thyroid function screening tests need to be done more frequently or at different intervals in infants with Down syndrome so that a thyroid problem can be detected early and treatment started promptly.
Participation in this study may lead to your infant being diagnosed and treated at a younger age for a thyroid disorder which will benefit their overall brain development and developmental milestones.
• Full term newborn with Down syndrome
• Age < 2 weeks old
If you are interested in learning more about this study please contact:
Dr. Penny Feldman or Karen Cullen BSN CDE, research coordinator, at
Click here for a flyer.
Compensation for study participation will be provided.
This study is funded by the Gerber Foundation.
Employment/Unemployment/Jobs Survey for People with Down Syndrome
Dr. Libby Kumin of Loyola University Department of Speech-Language Pathology/Audiology is conducting a survey to gather information on the current employment and unemployment status for adults with Down syndrome, ages 18-50 years old. The results of the survey will provide data on the current situation as well as information which will be useful in advocating for job training programs, funding, and the need for more variety and choices in jobs.
Whether you are working in a paid or a volunteer job, in a training program, or currently not working, your feedback will be helpful in gathering this important information. Please fill out the survey online at https://www.surveymonkey.com/s/RK5SWWS, or click here to print out a copy and mail the hard copy to:
Dr. Libby Kumin