February 15, 2019
Rare disease clinical trials are not the same as other trials. The paperwork and research rules might be the same, but everything else is different. The tests are different, the providers are different, but most of all, the families are different. People who are coping with a rare disease have different experiences, different fears, and different hopes than people with other kinds of diagnoses.
These differences are at the core of why we do what we do at TRiNDS. We know that conducting clinical trials are both essential to helping people with rare diseases and ask families to add stress to already stressful lives. Helping researchers navigate these issues is a core part of what we do.
TRiNDS Patient Science Liaison services offer customized advocacy, patient outreach, and research education services to researchers working with rare diseases. We can help connect you to the patient groups working in the community and help connect families to your trials. We’ll help you make the materials and strategies that you’ll need to recruit and retain eligible patients to your studies. Do you have an advocacy team? We can help extend your team by attending more events, creating special materials, or answering central inquiries.
TRiNDS offers expert research patient advocacy supports to research studies and clinical trials working with neuromuscular and other rare diseases. Contact TRiNDS today to request a quote.