Frequently Asked Questions

Learn more about participation, privacy and how to make the most of being a member of the PIN. If you don't find the answer you are looking for here, please contact the PIN coordinator.

What is a Patient Insights Network?

A Patient Insights Network (PIN) is more powerful than a traditional registry. It's an online platform where you can take surveys, upload your medical records, track your 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 patients, researchers and drug developers working to help find new and better treatments for disease. Another big benefit is that data is shared with patients so you learn how other participants 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.

About Participating

Who can join the PIN?

People living with or at risk of developing a health condition can participate. 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 a Patient Insights Network?

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.

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 family) when they may be eligible for research studies or clinical trials

If I have already joined a registry, can I still join the PIN?

Yes. Joining the PIN will make a real difference because data will be shared with patients and people who can help improve their lives.

Your Privacy

Who will have access to my PIN information?

Your privacy is a priority at AltaVoice. Only trained PIN managers will have access to your identifying information. Your identity, such as your name or email address, is shared only if you request it. You can set your sharing preferences for each survey that you complete. 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.

Only AltaVoice will send you messages, in accordance with your contact preferences. We built our systems to make sure your data is safeguarded.

Who owns the data?

Patients own their data. Period. 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.

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.

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.

About Clinical Trials

How will I learn about clinical trials?

Researchers cannot contact you directly. The PIN coordinator will send you information about a study or 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 much time does it take to participate?

Participating is easy and can be done whenever you have time. It takes about ten minutes to set up the 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 log in again 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 there is a health change or you have new information to post.

Will it cost anything to be in this PIN?


About AltaVoice

Who is AltaVoice?

AltaVoice is a health data company that protects patient privacy. We build Patient Insights Networks (PINs) that amplify the voice of patients to help researchers and drug developers find better treatments, faster. Unlike typical clinician-driven registries, the AltaVoice approach put patients at the center of the model.

We make it easy for patients to share their health journey, contribute medical data, and maintain their privacy while being connected to the latest research, treatment and disease education opportunities. We quantify the size of the patient population and provide data to compel researchers and drug developers to take action.

How does AltaVoice communicate with patients?

AltaVoice 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. AltaVoice will distribute emails with the Advocacy branding (if relevant) to patients who have expressed their willingness to receive information.

Communications to participants are only sent by AltaVoice trained PIN coordinators. AltaVoice only shares a participant's contact information if they grant permission.