The Population Therapeutics Research Group has developed a state of the art information technology platform, including the Newfoundland Genealogy Database and KINNECT, to assist genetic researchers in developing extended patient pedigrees for individuals involved in genetic research studies.    Any genetic researcher whose study has been approved by Memorial University’s Human Investigation Committee may access PTRG’s services. 

 

If a genetic researcher wishes to use the Population Therapeutic Research Group’s (PTRG) information technology platform to develop extended patient pedigrees then researchers are encouraged to ask all participants in the research study to complete an additional consent form, Genetic and Pharmacogenetic Studies, Patient Pedigree Development – Additional Consent Form.  

 

This consent form indicates whether the participant consents to the family tree information they provide, as part of the research study, being retained indefinitely in the Newfoundland Genealogy Database. Retention of study participants’ family tree information in the database will over time increase the utility of the database for other studies.

 

If a participant does not wish to consent to the information being retained indefinitely then the researcher may still use PTRG’s information technology platform for the purpose of developing extended family trees but the participant’s information must be removed from the database by PTRG at the end of the study.

 

It is essential that copies of completed consent forms for all study participants be provided to PTRG so staff are aware of what information must be removed from the database and what may be retained.

 

If you have any questions regarding the consent please contact PTRG’s project manager on 709 777 7282