About Genetic Disorders
DNA contains the instructions for producing the body’s cells; abnormalities in these instructions cause genetic disorders like Down syndrome, Duchenne muscular dystrophy, and sickle cell anemia. While the symptoms of many genetic disorders emerge only late in life, the DNA that causes them is present from birth. Accordingly, your child may help researchers better understand the progression of genetic disorders and, perhaps, how to halt those processes.
Smartphone Apps for Kids with Chronic Conditions
Do you have a child between the ages of 12-17 with spina bifida, spinal cord injury, traumatic brain injury, or cerebral palsy? If so, your child may be able to take part in a research study to evaluate if smartphone apps can help them manage their self-care routines. Compensation provided.
TrialNET Pathway to Prevention - Ages 2½ - 17
Are you the parent of a child aged 2 ½-17 who has a relative with type 1 diabetes? Your child may be able to take part in a research study to learn more about the development of type 1 diabetes in children who have a family member with the disease. Children found to be at an increased risk for type 1 diabetes may qualify for additional research studies aimed at preventing or delaying the disease.
Spinal Cord Stimulation for the treatment of motor deficits in people with Spinal Muscular Atrophy – Age 16-17
Are you or your child affected by Spinal Muscular Atrophy? You may be able to participate in a research study using spinal cord stimulation (SCS), an approved clinical therapy for pain syndromes that do not respond to drugs. Unexpectedly, SCS has shown the ability to promote the recovery of leg motor function in people with complete motor paralysis
DS-DETERMINED Study - Ages 13-17
Are you the parent of a child ages 13-17 with Down syndrome (DS)? Your child may be able to participate in a study to better understand how health and belief in self helps people with DS do the things they want to do. Participation in this study involves your child completing online surveys. Parents are permitted to help their child access the surveys. Compensation is provided.
Neurodevelopmental Outcome in Congenital Heart Disease (CHD)
Are you the parent of a child ages 6-16 who has been diagnosed with Congenital Heart Disease (CHD)? If so, your child may be eligible to participate in a study to help researchers understand brain development in children and adults with Congenital Heart Disease (CHD). Study involves an MRI scan of the brain, neurodevelopmental testing, and a small blood draw. Compensation provided.
Airway Clearance in MDS – Ages 6-17
Are you the parent of a boy between the ages of 6-17 years old who has been diagnosed with Duchenne or Becker muscular dystrophy? If so, your child may be able to participate in a research study to see if simple breathing tests can help determine how well your child can clear their airways of mucus. Compensation provided.
Biliary Atresia Study
Is your child between 6 months and 17 years old with a diagnosis of biliary atresia? Has your child had the Kasai procedure (surgery to improve bile flow)? If so, your child may be able to participate in a research study to learn more about the long term health of patients who have had the Kasai procedure. Participation by parents is voluntary. Compensation for transportation provided.