Who will have access to my PIN information?
Your privacy is our priority. Only trained PIN managers will have access to your identifying information. You can set your sharing preferences for the information that you contribute. You can also change your sharing preferences at any time. All personal identifiers, such as your name or email address, are removed before your answers are shared. We built our systems to make sure your data is safeguarded.
In accordance with your contact preferences, your email address will only be used by Invitae for direct messages, unless you request otherwise.
How will my identity be protected?
All personal identifiers, such as your name or email address, are removed before your information is shared unless you specifically ask us to disclose your contact and identifiable information. Invitae rigorously manages and operates all systems to comply with HIPAA and FISMA.
Who owns the data?
You own your data. Patients opt in and choose to share their information, and they can just as easily opt out. We are grateful that so many PIN participants are willing to share their information to support research.
What is Invitae’s role in safeguarding the data?
Invitae acts as the trusted intermediary to protect patient privacy, gather data and ensure that it is safeguarded and shared appropriately. All data is de-identified unless the patient opts-in to share their identifiable health information. Generally this is project specific, such as sharing information for a specific research study.
Who, besides me, can access the data?
With your permission, de-identified information is made available to the greater medical community, including non-profit organizations, advocacy groups, doctors, research scientists, medical investigators, regulatory agencies, pharmaceutical, biotech, and biomedical companies. De-identified data is shared with public research repositories that were developed to help the entire rare disease research community better understand disease.
Can I withdraw if I change my mind?
Yes. You can change your sharing preferences or ask to withdraw your information from the PIN in full at any time. De-identified information shared before you leave the PIN cannot be recalled.
Who should I contact if I have any questions?
Please contact us at firstname.lastname@example.org if you have any questions.