More about Invitae's Patient Insights Network (PIN)
- What is Invitae's Patient Insights Network (PIN)?
The Invitae Patient Insights Network (PIN) is more powerful than a traditional patient registry. It's an online platform where individuals can take surveys, upload medical records, track health outcomes, and learn about the latest research and clinical trials.
As an Invitae PIN participant, you can take health surveys, upload medical records, and maintain your privacy while learning about the latest research and clinical trials. You own your data. You opt in and decide what to share and when you want to be contacted. After you take a survey, you can see responses and learn how others manage similar health challenges. De-identified data is also shared with researchers and companies working to improve care and find cures for diseases like yours.
PIN data is safeguarded and de-identified, which makes it possible to share it with researchers and biopharmaceutical companies working to help find new and better treatments for disease. Data is also shared with patients, giving PIN participants the opportunity to learn how others are managing similar health challenges.
- Why should I join Invitae's PIN?
Your voice matters. The more information we collect about an illness through patient surveys and uploaded medical reports, the closer we can get to helping communities find treatments that work. As a PIN participant, it’s easy to answer research questions, share your experiences, contribute medical data and be connected to clinical trials and research studies in a way that protects your privacy.
With your participation, we can:
- Study why individuals have different symptoms
- Learn which treatments work and which don't
- Help medical professionals improve how they treat affected individuals with the condition
- Speed up research by collecting information that scientists can use
- Inform people living with health conditions (or their families) when they may be eligible for research studies or clinical trials
- Who can join Invitae's PIN?PINs are meant for people living with or at risk of developing a health condition. People who are younger than 18 years of age, or adults who cannot make their own medical decisions, must have their legal guardian, parent, or custodian register on their behalf.
- How do I set up an account for PIN?
Visit https://pin.invitae.com/ to learn more and register for the Invitae PIN.
To protect your privacy, your PIN account is totally separate from your Invitae portal account. So even if you already created an Invitae portal account, you will need to set up a new PIN account.
- If I have already joined a registry, can I still join the Invitae PIN?Yes. Joining the Invitae PIN will make a real difference because data will be shared with both patients and groups that can help improve their lives.
- Will it cost anything to join the Invitae PIN?No. Joining the Invitae PIN does not cost anything.
- How does the Invitae PIN protect my privacy?
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.
- Can I see other participants' responses in the Invitae PIN?Yes. Participants can view the de-identified data for each survey they complete, unless portions of the data are kept private. We encourage broad data sharing to help patients learn how other people are managing similar challenges.
- What's the connection between the Invitae PIN and clinical trials?
How will I learn about clinical trials through the Invitae PIN?
Researchers cannot contact you directly. The Invitae PIN coordinator will send you information about a study or clinical trial by email. If you are interested, we will tell you how to get involved.
Does joining the PIN guarantee a spot in a clinical trial?
No, because every trial has specific participant criteria that must be met. The benefit of being part of a research-ready community is that it is easier to learn about trial opportunities and identify patients who are likely to fit the trial or study criteria.
Should I join the PIN if I don't want to be involved in a clinical trial?
Absolutely! Your survey and medical information can help the entire medical community, including people you've never met.
- How does Invitae communicate with PIN participants?
Invitae serves as a trusted intermediary to protect patient privacy. Advocacy organizations, researchers and pharmaceutical companies can request messages be sent to targeted groups of participants. Invitae will distribute emails to participants who have expressed their willingness to receive information.
Communications to participants are only sent by trained Invitae PIN coordinators. Invitae only shares a participant's contact information if the participant grants permission.