Translation to Transform engages families, patients, and clinical researchers with translational researchers to design patient-centered clinical trials to test new therapies and devices. Through a series of three seminar sessions, attendees will engage in active discourse in order to incorporate the patient perspective into clinical trial design. Each session targets a cutting edge research topic that will benefit large segments of the hydrocephalus community. The ultimate goal is to develop a skilled community of hydrocephalus patients to participate in the development of patient-centered research studies that affect their health.
The projected outputs from this project are an online webinar to educate patients and caregivers about clinical trial design; a seminar series to discuss how current translational research projects can be transitioned into patient-centered clinical research; a whitepaper outlining patient and caregiver concerns, insights, and recommendations for conducting hydrocephalus clinical research; and information on how investigators can engage with the HA Patient Partner Committees on future studies.
Project collaborators include the Hydrocephalus Clinical Research Network; Adult Hydrocephalus Clinical Research Network; patients; caregivers; and researchers.
- Project Resource: T2T Webinar Recording
- Project Resource: T2T Webinar Education Packet
- Project Resource: Incorporating the Patient Voice into Hydrocephalus Research White Paper