Clinical trialCLINICALTRIALSMar 26
Researchers in France are looking for 1,000 families with children who have intellectual disabilities or autism caused by genetic changes. Families will answer questions online about their child's health and development to help doctors better understand these conditions and create personalized treatment plans in the future.
WHY IT MATTERSThis study directly recruits families affected by genetic intellectual disability and autism spectrum disorder to build a database that could lead to personalized medicine approaches for these conditions.
ResearchCLINICALTRIALSMar 26
Researchers at St. Jude Children's Research Hospital are recruiting 385 people—including patients, families, doctors, and scientists—to share their thoughts about ethical questions that come up when testing new treatments for rare brain and nerve diseases. The study wants to understand what different groups of people think is fair and right when designing these small, personalized treatment trials.
WHY IT MATTERSThis study directly shapes how future rare neurological disease trials will be designed and conducted, meaning your input as a patient or caregiver could influence the ethical standards that protect you in future treatment studies.