Inflammatory Bowel Disease (IBD) can sometimes add stress to your life and that may affect your physical symptoms of pain and stool habits. In this study, we want to know if practicing mindfulness via an online Mindfulness-based stress reduction (MBSR) course taught by a trained teacher can help with your IBD. If you are a patient with IBD, who is between 12-19 years of age, you might be eligible to participate in an 8 week long MBSR group course online. You will answer a series of questionnaires and submit stool samples 3 times over the course of the study, and you will also participate in 1 focus group to discuss your experience in the study. You will be compensated for your participation.

The Craniofacial Pathologies biobank is a research study collecting and storing reamining surgical specimens from the cranium and face from diagnosed patients at CHOP with a congenital craniofacial anomaly. The main purpose of this longitudinal study is to help researchers discover the causes of craniofacial pathologies that may lead to new treatments. 

Although we know a lot about returning to sports, exercise, and school after concussion, we know very little about returning to drive after a concussion.  Our Driving after Concussion study needs the help of both healthy and recently concussed teen partners in our research to understand how concussion affects driving behaviors in teens.

We are looking for healthy (have not had a concussion in the last year) and recently concussed teens who are 16.5-18 years old with a driver’s license and their own smartphone.

Our teen research partners may be asked to complete surveys about themselves and download smartphone applications that track symptoms associated with concussion and/or observe real-world driving behaviors. They may also be asked to come to CHOP's Driving Simulator Lab to complete a 3-hour session that includes surveys, clinical testing, and device testing along with a simulated driving assessment to observe driving behavior.

All teens who participate will be compensated for their time and effort.

The purpose of this study is to create a biorepository, which is a collection of biological samples and the data associated with them, to support our ongoing and future studies on ultra-rare pediatric neurodegenerative disorders. These include disorders associated with mitochondrial and autophagic dysfunction such as TBCK, congenital disorders of autophagy, mitochondrial disorders, and cases of neurodegeneration without known genetic diagnoses. Ultra-rare disorders affect 1 in every 50,000 kids.

Using the biological samples we collect, we intend to derive cellular disease models to study these disorders at a molecular level and screen for therapeutic targets. We also intend to look for biomarkers that may inform outcome measures in future interventions and clinical trials. By looking at the cells in these biological samples, we hope to understand how they work, what is wrong with them, and how we could fix them. The overarching aim is to yield generalizable knowledge about these disorders and translate it into better diagnostic awareness and clinical care.

Researchers at CHOP are trying to improve outcomes in the treatment of adolescents with anorexia nervosa. Eligible families will receive Family Based Treatment for anorexia nervosa. Some adolescents with anorexia nervosa will also receive Cognitive Remediation Therapy (a treatment that increases flexible thinking). Both parents are required to participate and any siblings living at home are asked to come to the first four treatment sessions. Families will receive treatment for approximately 6 months and will be asked to complete number of assessments during treatment and at two time points after treatment ends.

The purpose of this research study is to look at whether or not a sleep questionnaire can be used on infants 3 to 24 months of age, with or at high-risk of having Cerebral Palsy. This questionnaire is currently being used on older children, so we will be looking at a younger age group.

Inherited Metabolic Disorders (IMD) are single gene conditions that affect metabolic pathways. IMD are individually rare, but collectively common. Advances in diagnosis and management have greatly increased the life expectancy of patients with IMD. Gaps in our knowledge about adult neurocognitive outcomes and quality of life confounds the ability to obtain critical therapeutic supports, including social services and vocational rehabilitation. The lack of information also complicates our ability to provide anticipatory guidance to the families of younger patients about prognosis and how to optimize outcome. This study examines neurocognitive outcomes for adults with IMD with a focus on executive and adaptive function, domains necessary for managing life skills, using an entirely remote format.

Participants in this study will complete online surveys on their life skills, medical self-management skills, and quality of life. Thinking skills will be assessed through online questionnaires and a web-based collection of games that test executive function. Some participants will be asked to take part in an interview about their experience as an adult and the transition from pediatric to adult-centered healthcare. 

Getting a driver’s license is something that teens-including those with Congenital Heart Disease (CHD)-may look forward to. Although we know a lot about teenage driving and the programs in place to support learning this skill, we know very little about the early driving experiences of teenagers with CHD.

We are looking for teens with CHD who are 15 to 19 years old and have a learner’s permit or valid driver’s license, or interest in obtaining a learner’s permit or driver’s license and their parent/legal guardian. The study will be conducted remotely.

The electronic health record will be reviewed by a member of the study team, and teens and parents/legal guardians will be asked to complete demographic and health assessment surveys. Each teen and parent will participate in separate 45-minute video interviews to talk about what things support driving with a CHD and things that might make it harder to do. The video interview will take place on a video conferencing site using a computer or smartphone.

The total study participation time for each person (teen and parent/legal guardian) is 60 minutes. All teens and parents/legal guardians who participate will be compensated for their effort.

The purpose of this research study is to help us understand how well tofacitinib works as a treatment for ulcerative colitis or indeterminate colitis in pediatric patients. We are looking to enroll, males or females ages 6 to 21 years old with a diagnosis of ulcerative colitis or indeterminate colitis who have started tofacitinib therapy prescribed by their primary gastroenterologist within the past 2 weeks or will be starting tofafacitinib within 1 month.

This study involves the collection of medical information and samples from people with a confirmed or suspected leukodystrophy or related disorder affecting the white matter of the brain, as well as "healthy controls" who are not known to be affected by one of these disorders. The goal of the study is to advance our understanding of the cause of these disorders, the best tools to diagnosis them, and the best way to manage and treat them. Participation may involve collection of biological samples (e.g., blood, saliva, etc.), collection of medical information (e.g., medical records, genetic test results, radiology images, etc.), participation in functional assessments performed by physical and/or occupational therapists, and/or participation in interviews or electronic surveys. Participation may also include research-based genetic testing, or other laboratory tests that look at the presence of molecules, enzymes, etc. thought to be associated with a specific diagnosis.