Patient Data Sharing

  • GenomeConnect - Where Data is Shared
    Patient Data Sharing - September 13, 2019 - List of databases where data from GenomeConnect and the Patient Data Sharing Program are shared.
  • Patient Data Sharing Program Informational Handout
    Patient Data Sharing - August 9, 2019 - ClinGen has engaged patients in data sharing for nearly five years through its own patient registry, GenomeConnect. Given our experience with GenomeConnect, we are now working with other patient registries to enable sharing of de-identified genetic and health information.
  • GenomeConnect Informational Flyer
    Patient Data Sharing - August 9, 2019 - One page informational handout summarizing participation in GenomeConnect.
  • GenomeConnect Consent Form
    Patient Data Sharing - August 9, 2019 - Review the GenomeConnect consent form. If you are interested in participating in GenomConnect, this consent form can be completed online at genomeconnect.org.
  • GenomeConnect Sample Wording
    Patient Data Sharing - August 9, 2019 - We encourage clinicians and laboratories to add wording about GenomeConnect into testing reports, patient letters, and any other materials sent to patients. We have provided different wording options so that you can select the wording that works best for your practice and/or laboratory.
  • Patient Data Sharing Program Consent
    Patient Data Sharing - August 9, 2019 - ClinGen is working to is working to better understand the relationship between genetics and health to improve patient care and research. This effort relies on gathering more information through data sharing. If your registry is on the same platform as GenomeConnect through Invitae, your group can opt to participate in the Patient Data Sharing Program. The consent form allows a small number of members of the ClinGen patient data sharing program to access participants’ registry accounts to review their reports and prepare genetic and health data for sharing. All information shared is de-identified. As part of participation in data sharing, registry participants also have the option to receive updates about their genetic testing results from the ClinGen team should we learn that their variant classification on their uploaded report is out of date.
  • GenomeConnect - Winter 2017 Newsletter
    Patient Data Sharing - August 9, 2019 - The Winter 2017 Newsletter summarizes the GeomeConnect participant matching feature, GenomeConnect presentations in 2016, and the option to participate in additional research.
  • Patient Data Sharing Program Recruitment Toolkit
    Patient Data Sharing - August 9, 2019 - The Patient Data Sharing recruitment toolkit provides resources for registry and advocacy groups that are working to share data through the Patient Data Sharing Program. Resources in the toolkit include talking points, a program overview, social media posts, press release language, and more.
  • GenomeConnect Summer 2019 Newsletter
    Patient Data Sharing - August 9, 2019 - The Summer 2019 GenomeConnect Newsletter provides a participation update, the need to reconsent at age 18, and provides information on candidate genes.
  • GenomeConnect Overview Video
    Patient Data Sharing - August 9, 2019
  • GenomeConnect Winter 2018 Newsletter
    Patient Data Sharing - August 9, 2019 - The Winter 2018 GenomeConnect Newsletter includes a timeline of genetics, information about the exome vs. genome, and a reminder for participants to update their account preferences regarding updates about their genetic test results!
  • GenomeConnect - How to Upload Your Genetic Testing Report
    Patient Data Sharing - August 9, 2019 - An important part of participating in GenomeConnect is sharing your genetic test report. This short video explains how to upload your report to GenomeConnect.
  • GenomeConnect Spring 2018 Newsletter
    Patient Data Sharing - August 9, 2019 - The Spring 2018 Newsletter includes information about Gregor Mendel, GenomeConnect data sharing to date, and how participants can make sure their data is shared!
  • GenomeConnect - Obtaining a Copy of Your Genetic Test Report
    Patient Data Sharing - August 9, 2019
  • GenomeConnect Fall 2018 Newsletter
    Patient Data Sharing - August 9, 2019 - The Fall 2018 GenomeConnect Newsletter includes an update on GenomeConnect participation, information about how GenomeConnect is working with other registries to share data, summaries of inheritance pattern, and points to consider before downloading raw data from at-home genetic testing.
  • How Can Genomic and Health Data Shared by Patients Inform Variant Classification
    Patient Data Sharing - August 9, 2019 - This video provides an introduction to patient data sharing and provides information on how patient-shared genotype and phenotype data can inform variant classification.
  • GenomeConnect Winter 2019 Newsletter
    Patient Data Sharing - August 9, 2019 - The Winter 2019 GenomeConnect Newsletter provides a participation update, information on mitochondria, directions for participants to update their accounts, and privacy considerations.
  • GenomeConnect Fall 2017 Newsletter
    Patient Data Sharing - August 9, 2019 - The Fall 2017 GenomeConnect Newsletter provides an enrollment update, information about types of genetic test results, how to celebrate family history day, and a chance to meet the genetic counselors on the GenomeConnect team!
  • GenomeConnect Spring 2017 Newsletter
    Patient Data Sharing - August 9, 2019 - The Spring 2017 GenomeConnect Newsletter celebrates the 1000th GenomeConnect participant, encourages participants to update their account preferences, provides information about additional research, and highlights the importance of uploading your genetic testing report.
  • GenomeConnect Health Survey
    Patient Data Sharing - March 22, 2019 - Our online health survey is designed to capture a snapshot of participant's overall health. We want to know as much as we can about their health, from their head to their toes! Questions are organized by body system (digestive system, immune system, cardiovascular system, etc.), and participants can skip any questions they do not feel comfortable answering. Participants are asked to update this each year or as anything changes with their health. Additionally, depending on their answers to this survey, they may be asked to complete follow-up surveys in the future if we need more information about any of their specific health issues.