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Down Syndrome Research Group FAQs
About the Down Syndrome Research Group
The Down Syndrome Research Group, known to patients and collaborators as DS Allies, is a group that wants to help people with Down syndrome by doing research. We make sure that people with Down syndrome help us in our work.
DS Allies has researchers and families from all over the country. For example, we work with Dr. Maria "Sukie" Rayas at the University of Texas, Dr. Ignacio Tapia at the University of Miami, and Dr. Sheela Magge at Johns Hopkins University. We hope to continue making connections all over the country so that our research can reach more people. We also work with many people at CHOP.
No! We are looking for people from all over the country. Visits can be online or in person, and we might help with travel costs sometimes.
Please email us at [email protected], call/text Ahtish at 215-490-8905 or Emily at 215-847-1798.
Contact us anyway! We will have studies in the future that you can join, too.
For Potential Study Participants
Research helps us find answers to health questions. It helps doctors and scientists learn better ways to understand and treat illnesses and other challenges to their well-being that people with Down syndrome experience.
Clinical research is when scientists study people. They work directly with humans instead of animals or cells.
Research is important for finding new information to help people. By helping with research, you could help discover things that might make life better for people like you in the future.
Informed consent has two parts: a form and a talk. The form gives you information to help you decide if you want to join a research study. A researcher will explain the study's purpose, how it works, any possible good things that might happen, any possible bad things that might happen, and answer your questions.
Assent means that people in research who may need help making decisions about the study can have a conversation to learn more. The conversation covers the procedures, information a participant would want to know, and addresses any questions so that the person can decide if they want to join the study. Assent is done in addition to consent by a parent or legal guardian to make sure the participant understands the research and what it means to take part.
About Down Syndrome
Down syndrome is when a person is born with an extra copy of chromosome 21. This can change how their brain and body grow.
People with Down syndrome have a higher chance of some health problems, like heart issues, vision or hearing problems, and sleep problems.
The first doctor to study Down syndrome was John Langdon Down. That’s why it is named after him.
Everyone with Down syndrome is born with it; you can’t catch it. About 1 in 772 babies in the United States has Down syndrome.
Trisomy 21 is another name for Down syndrome. Most babies get 23 chromosomes from each parent. Babies with Down syndrome have three chromosomes at position 21 instead of the usual two.
About Community-engaged Research
Community engaged research means working with people from the community that the research will affect. The goal is to have community members as equal partners in the research.
Right now, we are doing community engaged research with CHOP's Research Family Partners group. They help set up meetings between researchers and families and make it easier for both groups to work together. This helps us get feedback from families during the research.
Community engaged research is important because it helps us ask questions that matter to the people we are studying. It also lets us hear their thoughts and make sure their voices are heard and valued.