Section outline

  • Our goal is to equip rare disease researchers to be successful.  This goal is lofty and would require life-long monitoring to assess.  We will be monitoring participants percent research and research publication numbers for 5 years after the completion of the program as an outcome measurement. 


    We have also identified some yearly outcome measurement using scoring rubrics.  

    1) Content Retention:  A pre-participation quiz will serve as a baseline for a post-participation quiz (pre-participation plus specific subject area content).  The passing rate will be 70%.  The pre-participation quiz will be closed book, but the post will be open book, internet, colleagues and can be taken up to 3 times to be granted a certificate.

    2) Ability to communicate orally:  A pre and post participation "elevator" presentation will be assessed on each candidate.  These 1 minute descriptions are designed to communicate participant's research goals to a lay population.  The goal is that this will facilitate communication with funding, family, and advocacy groups. A scoring rubric and a limited number of evaluators will be used to allow for consistent evaluation.

    3) Ability to design a research project:  This will be assessed by the consortium group's evaluation of the poster presentation at the end of the year-long participation.  A scoring rubric will be used by members of the participant's consortium and other consortium leaders. 

    4) Ability to perform a research project:  This will be assessed by the consortium group's evaluation of the poster presentation at the end of the year-long participation.  A scoring rubric will be used by members of the participant's consortium and other consortium leaders. 

    5) Ability to present a research project. This will be assessed by the consortium group's evaluation of the poster presentation at the end of the year-long participation.  A scoring rubric will be used by members of the participant's consortium and other consortium leaders.