Project Summary

Patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) are at the heart of this meeting. Even within our organization, a strong tendency to place the doctor and the researcher at the top of the pyramid remains. This project will establish a new way of thinking about Alstrom Syndrome and how our community views PCOR/CER, how it will receive and make use of its findings, and what evidence it needs to reach health and healthcare decisions. While exploiting ASI’s data bases and social media sources, we will develop and train all stakeholders by involving them in every step of this project. From the evaluation of existing information through the development of research questions, It’s Time to Talk! will engage all participants in honest dialogue and examination that informs and enables all to understand, determine, and assign priorities to those questions that make a difference when answered. 

The projected outputs from this project are the establishment of a multi-stakeholder steering committee (SSC) to identify patient concerns and viability of PCOR possibilities, and present them using participant-led topic-based formats while de-emphasizing more traditional approaches such as lecture/Q and A; and a prioritized list of limited PCOR topics developed by the SSC for global evaluation, culling the results, and, ultimately, pursuing CER options.

Project collaborators include JRM Consulting; HM Consulting; Beacon Bay Consulting; Steering Committee members; scientific collaborators; Foster and Company LLP; and professional attendees. 

More on This Project

Project Resource: 8th Alstrom Syndrome International Family Conference Agenda

Project Resource: Stakeholder Steering Committee Meeting Packet

Project Resource: Alstrom Syndrome: What Do We Know?

Project Information

Jan D. Marshall, BA
Alstrom Syndrome International

Key Dates

27 months


Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 4, 2022