In
2013 we, at The FPIES Foundation, presented the first-of-its-kind FPIES Global Patient Registry through the Patient Crossroads CONNECT program a patient registry platform company. Last year,
Patient Crossroads underwent a rebranding to become AltaVoice. Through Altavoice we were introduced to the
Power of the Patients Insights Network (PIN) which enables us to further
amplify the voice of children and families living with FPIES to help researchers and potential drug developers find
better treatments, faster.
What is
AltaVoice?
AltaVoice,
formally Patient Crossroads, is a patient-centered data company that optimizes
the search for better treatments for diseases.
They build and host Patient Insights Networks (PINs). PINs are ideal for
collecting, curating and sharing patient and clinician reported health data.
Altavoice works with drug developers, advocacy organizations, like The FPIES
Foundation, and academic researchers, uniting them with patients to help
improve lives.
What is a PIN?
A PIN stands for Patients Insights
Network. An AltaVoice PIN is more
powerful than a traditional registry. It is an interactive, online platform for surveying patients, uploading
medical records, tracking health outcomes and sharing de-identified disease
data. Additionally, unlike typical clinician-driven registries, PINs are
patient powered. The AltaVoice PINs make it easy for families to share their
child’s experience, contribute medical data and maintain their privacy while
being connected to the latest research, treatment and disease education opportunities.
Sharing Data & Improving Care
The AltaVoice PIN model was built
with patients at the center, in control of their data. They believe strongly
that advances are made faster when data collection is standardized and advocacy
groups, such as ours, include the data in a global network, among other rare
diseases that may share commonalities.
We share AltaVoices goals to
encourage the sharing of de-identified data and studying findings to help
patients learn how others manage similar health challenges. Sharing data also helps quantify the
patient journey and build a stronger case for improving care.
Your Privacy
AltaVoice remains passionate about
using their expertise to save time, lower costs and improve patients’ lives in
a protected environment. Protecting
patient data while providing broad access to health information is the
cornerstone of their system design. AltaVoice rigorously manages and operates
all systems to comply with HIPAA, FISMA and data and patient protection laws.
Inherited & Rare Diseases
AltaVoice has also partnered with
Invitae to create new
offerings to advance research and access to care for patient with inherited and
rare diseases. While FPIES is not known
to be a genetic condition, this merger enables our registry to be open to
collecting the data needed for investigating FPIES as a genetic condition. We are excited for these possibilities under
our free FPIES Patient Registry.
The
AltaVoice PIN provide patients, The FPIES Foundation, and research groups with
a platform where they direct how, when, and with whom to share their clinical,
and in the future, genetic, information to benefit their children and families
and further research efforts for FPIES.
