About us

Discover the power of the PIN

Patient Insights Networks, or PINs, amplify the voice of patients to help researchers and drug developers find better treatments, faster. Since 2007, we have built more than 80 PINs and inspired thousands of patients to join the movement to collect and share data as broadly as possible. PINs benefit patients. We believe that advances are made when data are shared and collected in a standardized way, and when patients are at the center.

What is a PIN?

A PIN is an online platform for collecting health information from patients around the world. PIN data is safeguarded and shared to help researchers and drug developers understand the symptoms, diagnosis, test results, genetics, quality of life and cost of living with serious diseases and health conditions.

What happens when you 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. We promise. 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. Make your voice heard. Join today.


Nexus is a collaboration between academic institutions, advocacy and industry to answer important questions about narcolepsy.

Who can join?

Adults (18 and over) who have been diagnosed with narcolepsy by a doctor.

Why should I join?

To help researchers learn more about narcolepsy and the best ways to manage it.

What do I need to do?

Once you have registered for NEXUS, you will be invited to complete a questionnaire describing your own narcolepsy experience, diagnosis, symptoms and treatment. Participants will be asked to complete follow-up questionnaires every six months.