What is the Canavan Disease Patient Insights Network (PIN)?
The Canavan Disease PIN is a network to understand and share the health experiences of people with Canavan Disease. More than a traditional registry, a patient insights network helps us build an engaged Canavan Disease community, where patients are at the center. Participants take health surveys and learn about the experiences of others living with Canavan Disease. Participants immediately see how experiences fit into the larger picture of quality of life around the globe. Privacy is protected using our partner, PatientCrossroads, proven platform, so participants can share de-identified data if they choose. Participants may choose to receive notice of clinical trial recruitment and the latest research news.
More than a traditional registry, a PIN is an online, global, patient-centered network, and together, we can glean insights from patients that compel drug developers to create treatments faster than the traditional registry model.
The time is now!
Patient data are critical to development and approval of new treatments. We encourage families to join to build on this momentum.
Share the Canavan Disease PIN with families in your community. Post it to your homepage, social media and newsletters. Encourage patients to join to learn how others live with disease and to be connected to the newest developments and information.
With a PIN everyone has a role and any organization can take part.
To become a supporter, send me your:
Then, see your organization represented in the Canavan Disease PIN!
Next steps for advocacy supporters:
We encourage all patients and families to join the Canavan Disease PIN.
Interested professionals and advocates are also invited to participate and view more data.