ARG Strategic Advisory Board Meeting 5/24
May 24, 2018The ARG SAB (Strategic Advisory Board) regularly convenes to discuss emerging trends and issues in rare diseases, adding to the spirit of innovation that is already present in all of our functional areas. This session's roundtable centered on transformative ideas to potentially add new roles to ARG project teams. These jobs would help enhance patient compliance, improve the visibility and promotion of trials, and ultimately, ease the burden of clinical research on rare disease patients. As part of this exploratory process, the SAB provided perspectives on the vital issues of HIPPA considerations and patient confidentiality; in addition, the SAB discussed the impact these roles could have on patient advocacy, recruitment, compliance, and retention.
