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Research and Family Liaisons

Consent, Assent and Parental Permission Mentoring Program (CAPP)

Introduction to CAPP

The Consent, Assent and Parental Permission Mentoring Program (CAPP), offered quarterly, provides educational lecture/discussion sessions on topics such as ethics, research regulations, contextual issues of the consent conference and aspects specific to presenting study information to families with limited English proficiency.

Participants in the program observe other staff presenting study information to families. RFLs then observe each CAPP participant as they present information to families. Participants who attend all sessions and fulfill the mentoring portion of the program receive an official certificate of completion.

The CAPP program helped me look at the research process through the eyes of patients and families, and reinforced the idea that patient safety and protection come first.

Ellen Braun-Kelly, Clinical Research Associate 

Program Sessions

See the 2012 schedule and registration information (PDF).

Session I: Historical background and regulatory overview

Provides an introduction to the mentoring program and a historical overview of ethical concepts, federal regulations and institutional policies pertinent to the consent, assent and parental permission processes.

Session II: Fieldwork

Participants observe at least three consent conferences and return to Session III prepared to share and discuss what they have observed.

Session III: Observations and practical aspects

Focuses on the fundamentals of consent, assent and parental permission processes by discussing the content, context and communication elements of the consent conference.

Session IV: Practice and policies for families with limited English proficiency (LEP)

Participants begins putting lessons learned from the previous session into practice using studies that they plan to present to families. The latter half of the class focuses on the institutional policies regarding consent, assent and parental permission when presenting information to families with limited English proficiency (LEP).

Session V: LEP practical aspects and wrap-up

Reviews key aspects of the consent, assent and parental permission processes while introducing practical aspects, such as working with interpreters, when presenting information to families with limited English proficiency (LEP). It is also an opportunity for participants to comment on their experiences and evaluate the program.

Session VI: Mentoring

RFLs observe and work with each participant as they lead three or more consent conferences.

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