Rare Disease Research Training Program
Rare diseases are unique as a medical field, comprising a large number of disorders with a small number of patients in each. The methods employed in rare diseases research (RDR) require models and analytical tools that are different from more common conditions. The Rare Disease Research Training Program is an 8 week curriculum provided over an academic year employing specific tools and methods unique to rare diseases.
There are 6 components to this program:
- an initial two day face-to-face RDR methods and policy workshop;
- a series of semi-monthly interactive, web-based seminars on methodologies;
- a semi-monthly "chalk board" videoconference focusing on individual trainee RDR projects;
- a web portal with course content, opportunities for interaction among trainees, and interaction between trainees and teachers/mentors;
- a "capstone" research project presentation at the semi-annual RDCRN meeting; and
- a pre-and post-test to quantify understanding of the topics involved in RDR prior to and following the curriculum.
Scholars for the 2017 - 2018 cycle of this program have been selected.
Debra Regier, MD, PhD
Conference on Clinical Research for Rare Diseases
The Conference on Clinical Research for Rare Diseases addresses rare disease research methodology and is intended for new investigators, trainees, and junior faculty. Learn More.