"About Me" Pedigree Tool Pilot

Overview

About this study

The objective of this study is to determine the utility and accuracy of patients utilizing the About Me pedigree tool to create their own pedigrees for use in risk assessment in a cardiovascular genetics clinic. 

Participation eligibility

Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Contact the study team to discuss study eligibility and potential participation.

Inclusion Criteria:

  1. Participant is 18 years of age or older
  2.  Patient or biological parent of a patient being evaluated for the first time by Dr. Ackerman in CV Genetics clinic for a possible genetic syndrome causing heart disease (i.e Long QT syndrome or Hypertrophic cardiomyopathy).  
  3. Patient or parent must have some knowledge of their family history (not adopted). 
  4. Fluent English reader. 
  5. Has reasonable computer skills

 

Exclusion Criteria: 

  1. Patient or biological parent is not 18 years of age
  2. Patient (proband) is adopted or otherwise has no knowledge of family history
  3. Not fluent English reader
  4. Limited ability to perform computer tasks.

Participating Mayo Clinic locations

Study statuses change often. Please contact the study team for the most up-to-date information regarding possible participation.

Mayo Clinic Location Status

Rochester, Minn.

Mayo Clinic principal investigator

Jennifer Kemppainen, M.S., CGC

Closed for enrollment

More information

Publications

Publications are currently not available
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CLS-20438541

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