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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 firstname.lastname@example.org.
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
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 email@example.com.
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