Patient Insights Network

Frequently asked questions

Our Patient Insights Network (PIN), which began as PatientCrossroads, is now a web of networks that securely houses and safeguards aggregated data for more than 400 medical conditions from more than 100 advocacy organizations. Since 2007, we have built more than 80 PINs and inspired advocacy groups to join the movement to collect and share data as broadly as possible to bring new and better treatments to patients, faster. Our PINs help small advocacy groups make major impact, and enhance the global reach of larger groups.

About the PIN

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.

Invitae PINs help organizations generate research and academic interest, prepare the community for trial recruitment and ultimately generate more funding. Unlike typical clinician-driven registries, patients are at the center of our model. Our PINs make it easy for patients to share their experience, contribute medical data, and maintain their privacy, while staying connected to the latest research, treatment, and disease education opportunities.

We build and host PINs for advocacy groups at no charge. We also provide expert advice and free tools to support marketing and outreach. We diligently protect patient privacy and share de-identified data with their permission. We know from more than a decade of experience that sharing disease data helps break down barriers and optimize the search for new and better treatments.

A PIN can be branded with your style and messaging, or take a more inclusive approach, so you can recruit other foundations to join the global program. We can leverage our expertise to engage biopharmaceutical companies to extend your PIN, so you can take full advantage of our solutions or fund your marketing and outreach.

What common data is collected for each disease?

Invitae collects data in a standardized fashion to maximize the potential for pan-disease analysis. In partnership with disease experts and PIN partners, topic-specific survey sets have been developed to expand the common data collection and enhance analysis across diseases. You can see our standard surveys when you enroll in our PIN Partner Program.

Can disease-specific information be collected?

Yes. After your PIN is launched, you can develop a survey to collect answers for 20 to 30 single or multiple choice questions at no charge as long as you are willing to share the de-identified data. Your PIN may publish a new disease-specific survey once each year.

Can the data be collected under an institutional review board (IRB)?

Yes, Invitae can support one or more consent processes for individual studies or sub-studies. A central IRB-like Chesapeake IRB is often used for review of protocol and consent materials.

In our PIN Partner Program, participants opt-in to the program and are then presented with one or more surveys or IRB-approved studies, developed for a given PIN. This two-level model makes it convenient for patients to register and join one or more IRB-approved studies. View the guideline for academic and research notices. 

Can PIN Partners access patients' contact information?

PIN Partners can receive the email address from participants who choose to share their email address to join the organization’s mailing list. Email addresses and other identifiable data are not provided in conjunction with any de-identified data. No other users or parties can be given a  participant's email address, unless the participant requests it. Invitae acts as the trusted intermediary, facilitating all contact with PIN participants.

What are the marketing requirements of a PIN Partner?

To qualify as a PIN Partner, an organization must have the ability to contact patients and encourage participation during events or planned outreach at least three times per year. Organizations must agree to place a link to the PIN on their homepage and in relevant communications. The more effort an organization puts into promoting its PIN, the more valuable the data becomes for all.

Can more than one PIN be established for a condition?

Our most successful programs are built around an inclusive PIN identity that is used by all groups and foundations, creating a single, cohesive resource for the disease community. We can leverage our expertise to engage biopharmaceutical companies to fund your marketing or extend your PIN so you can take full advantage of our solutions.

Advocacy organizations can create a PIN to build a patient community, even if a similar community already exists. We make it possible to brand each PIN to represent a specific organization and aggregate the data so that there is one source for data on each disease, even if multiple advocacy organizations exist.

Are disease organizations outside the US eligible to partner?

Yes. Our Patient Insights Networks have been used by many international partners.

Can participants outside of the US participate in their local language?

Google Translate is available for real-time translation, and with sponsorship we will manually translate the site as necessary.

Privacy

Who owns the data?

Patients own their data. Patients opt in and choose to share their information. They can just as easily opt out. We are grateful that so many patients are willing to share their de-identified information to support the development of new treatments.

Invitae acts as the trusted intermediary of information, gathering data and ensuring it is safeguarded and shared appropriately. 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 all PINs to share data broadly to further research.

Does Invitae share participants' contact information?

Invitae protects participant privacy. We only share a participant's contact information if they request it it be shared. We distribute all messages (branded with your logo) to participants through the Patient Insights Network, in accordance with the participant's contact and communication preferences.

Can participants see other participants' responses?

Yes. Participants can view the aggregate set of 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.

Who has access to the de-identified data?

Through our PIN Partner Program, Invitae partners, sponsors, and participants have access to the de-identified data. Researchers, healthcare providers, or other professionals with interest in the disease can be granted access to the data as well with permission from PIN participants. It will be possible for participants to contribute their de-identified data to public repositories developed specifically to help the entire rare disease research community better understand a given condition.

Is the data secure?

Protecting patient data is Invitae’s priority. Invitae operates all systems including the Patient Insights Networks in rigorous compliance with HIPAA and FISMA. Learn more on our PIN security and privacy webpage.

Invitae’s role

Why Invitae?

We built our platform with patients at the center, in control of their data. We believe that advances are made faster when data collection is standardized and shared. One robust network gives researchers and biopharmaceutical companies access to the largest patient populations worldwide.

Invitae’s Patient Insights Network (PIN), which began as PatientCrossroads, securely houses and safeguards aggregated data for 400+ medical conditions from more than 100 advocacy organizations. Since 2007, we have built more than 80 PINs and inspired advocacy groups to join the movement to collect and share data as broadly as possible to bring new and better treatments to patients, faster. These data have made a difference in work undertaken by the National Institutes of Health (NIH), the Patient-Centered Outcomes Research Institute (PCORI), numerous biopharma companies, and scores of advocacy organizations.

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.

Why does Invitae provide the PIN Partner Program at no charge?

We provide Patient Insights Networks at no charge to inspire advocacy groups to start collecting data from patients living with the estimated 10,000 diseases that we know of today.

Our PIN Partner Program lets patients and family members create accounts, provide demographic information, and respond to a pre-populated set of standardized baseline questionnaires that capture disease history, family history, quality of life, and cost of care  information.

Your organization can co-brand an Invitae PIN Partner Program with your logo as well as ours. You can also customize parts of the homepage to tell your story.

We encourage organizations take a more inclusive approach so you can recruit other foundations to join the global  program.

What is Invitae's role in communicating with patients?

Advocacy organizations, researchers, and pharmaceutical companies can request messages to be sent to targeted groups of participants. Invitae will distribute emails with the program’s branding to patients who have expressed their willingness to receive information. Communications to participants are only sent by Invitae-trained PIN coordinators. Invitae only shares a participant’s contact information if they grant permission.  PIN Partners are provided with communication guidelines for more information on Invitae practices and policies.

Ready to get started?

Building engaged communities

Partnering together to improve the lives of patients and families