What is a Patient Insights Network?
A 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.
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.
How many PINs have you built?
Since 2007, we have built more than 80 PINs and inspired hundreds of advocacy groups and thousands of patients to join the movement to collect and share data as broadly as possible to find new and better treatments, faster.
What happens when I join?
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.
Who can join the Invitae PIN?
PINs are meant for people living with or at risk of developing a health condition. Children 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.
Why join the Invitae 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
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.
How much time does it take to participate?
Participating is easy and can be done whenever you have time. It takes less than ten minutes to set up an account. Survey completion times vary from five or ten minutes to an hour depending on the complexity of questions and the disease. If you need more time to finish a survey, you can save your answers and finish later.
Will I be asked to provide more information in the future?
Yes. The data is most valuable when it is kept up-to-date. You will receive a reminder to update your information at least once a year and can make updates anytime you experience a health change or you have new information to post.
Will it cost anything to join this PIN?
Can I see other participants' responses?
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.
Can I participate in another language?
Google Translate is available for real-time translation, and for some sites a formal translation is provided.
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. Due to competitive or regulatory requirements, there are situations where biopharmaceutical companies or researchers collect data that they want to keep private. However, we encourage sharing data broadly to further research.
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.
How will I learn about clinical trials?
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.
Who is Invitae?
Invitae is a genetic information company whose mission is to bring genetic information into mainstream medical practice to improve the quality of healthcare for billions of people. We believe that patients own their data and have the right to share it in a manner that protects their privacy.
Invitae’s PIN network began in 2007 as PatientCrossroads. Over the years, we’ve developed programs for more than 400 diseases and worked with more than 100 advocacy groups, the National Institutes of Health (NIH), Patient-Centered Outcomes Research Institute (PCORI), as well as biotech and pharmaceutical companies.
Invitae is dedicated to amplifying the voice of patients to optimize the search for better treatments for diseases.
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.