An important goal of NBS Connect is to help find effective treatments. We hope to achieve this goal by connecting families who are interested in participating in clinical trials with researchers who are recruiting patients.
All registered participants are eligible to receive notification of research studies, including recruitment, updates and results outcomes.
The prospect of participating in a clinical treatment trial that has the potential to improve function, prognosis, and quality of life can give families and individuals living with chronic conditions a lot of hope. But with that hope may come an emotional rollercoaster that brings elation and anxiety as families learn about study eligibility and what is involved in participation. A family’s best approach is education about the research goals, eligibility, process, and pros and cons of study participation. Such information comes from resources like NBS Connect and from open communications with the study team.
Families are strongly encouraged to read Understanding Clinical Trials before making a decision about participating in clinical trials.