News & Resources


-- Acquisition will enable more comprehensive understanding of inherited diseases through permission-based sharing of genetic information and patient insights --


SAN FRANCISCO, January 6, 2016 -- Invitae Corporation (NYSE: NVTA), one of the fastest growing genetic information companies, today announced it has acquired AltaVoice (formerly PatientCrossroads), a privately owned, patient-centered data company with a global platform for collecting, curating, coordinating, and delivering safeguarded data from patients and clinicians. The acquisition, complemented by several other unique partnerships, expands Invitae's Genome Network, designed to connect patients, clinicians, advocacy organizations, researchers, and therapeutic developers to accelerate the understanding, diagnosis, and treatment of hereditary disease.

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AltaVoice(SM) formerly PatientCrossroads) announced it has launched its new website which includes a series of “Patients Living With” infographics covering a variety of diseases. The home page features two diseases and a link that makes it possible to explore the disease directory in alphabetical order.

Site visitors may select a topic of interest and enter their contact information to view several informative infographics. The home page of the site currently features Patients Living with Eosinophilic Esophagitis (EoE) and Adrenal Insufficiency. These graphics tell a story from the onset of symptoms to time of diagnosis through treatment. They are designed to help researchers understand the size of the patient population and current age and gender of the members of the Patient Insights Networks for each disease.

New Name Underscores Focus on Delivering Insights to Enable Drug Developers to Meet FDA Mandates for More Patient-Centered Drug Development

PatientCrossroads announced it has changed the company name to AltaVoice℠ and created a new brand identity aligned with its Mission: Amplifying the voice of patients to optimize the search for better treatments for disease. The move reflects the latest product innovations designed to deliver patient insights to drug developers faster, and for far less, than traditional registries and CRO organizations. Read More

The Bonnie J. Addario Lung Cancer Foundation (ALCF), the American Lung Association (ALA) and AltaVoice (formerly known as PatientCrossroads) today announced the new Lung Cancer Registry. The Registry is a place to gather and store detailed information for patients with lung cancer, which kills more Americans each year than the next three most frequent types of cancers combined.

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Previews plans to unite additional cancer organizations under 21st century global data collection model.

PatientCrossroads announced the expansion of its global Patient Insights Network (PIN) to include SerPaciente, the first patient-centered data collection program across an entire continent. At the All Together Against Cancer Congress in Brazil, SerPaciente, Inc. debuted its online interactive Patient Insights Network, a platform that puts patients at the center of a 21st century model for collecting, curating, coordinating and delivering data from patients and clinicians faster, and for far less, than traditional registries and CRO organizations.  ​Read More  

A panel set up by Obama's Cancer Moonshot program says we should make better use of existing research data.
 
"Reuse, and recycle" is a famous saying of the environmental movement, but cancer researchers might learn a thing or two from that mantra as well.
 
That's the gist of several recommendations that came out today from a blue-ribbon panel set up by the White House as part of President Obama's Cancer Moonshot program. Its audacious goal is to move the needle closer to a cure and achieve a decade's worth of progress in five years.
 

Our team recently listened via webcast to the 2016 Health Datapalooza conference in Washington DC. This was our first time attending this meeting, which is focused on bringing data to life in ways that matter in healthcare. Highlights included discussion on harnessing data and analytics to redefine delivering and paying for healthcare in the coming decade; plenary presentations by powerhouse Health and Human Services CTO Ms. Susannah Fox and CMS Acting Principle Deputy Administrator Mr. Andy Slavitt; and commentary on the many ways more open and transparent data are going to define the impending health technology revolution. Below, we’ve pulled out our biggest takeaways from the meeting, followed by detailed coverage of the proceedings.

Top Seven Takeaways
1.This conference echoed what many believe – data will be the currency of the future in healthcare, and the fuel that drives better outcomes at lower costs. Organizations that collect and use data most effectively are far more likely to win, and conversely, those who don’t invest in analytics, or who silo their data, face risks. Read the full article.

PatientCrossroads, the National MPS Society and 22 advocacy organizations worldwide have formed the first pan-mucopolysaccharidosis online patient registry

PatientCrossroads and 22 patient advocacy foundations worldwide have announced the launch of the ConnectMPS patient registry at the 14th International Symposium on MPS and Related Diseases held recently in Bonn, Germany. Initially launched in 2014 with a focus on mucopolysaccharidosis (MPS) III, known as Sanfilippo syndrome, the registry program has expanded from two advocacy organization partners — Jonah’s Just Begun and Ben’s Dream — to include 22 national and international advocacy partners for all major forms of MPS through a partnership with the National MPS Society.

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Cites MPS Society and Latin American partnership as examples of joining forces to prevent data silos from impeding medical advances

PatientCrossroads CEO Kyle Brown is participating in the National Cancer Moonshot Summit at Howard University today. The invitation from Vice President Joe Biden and Jill Biden, Ph.D., recognizes PatientCrossroads’ innovative platform and ability to form patient-centered collaborations with advocacy groups, researchers and drug developers to optimize the search for new treatments for cancer and other diseases. 

More companies are using patient registries or creating their own registries to do more than track side effects after new drugs hit the market. The data are being collected and analyzed to inform development programs, assist in clinical trial design and, increasingly, to show regulators and payers the value of their medicines in the eyes of patients. Such efforts are beginning to pay off, generating data that can’t be gleaned from talking to key opinion leaders or reading lab test results.

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125 cancer and rare disease advocacy organizations across Latin America will join the PatientCrossroads CONNECT patient registry platform.

PatientCrossroads today announced a partnership to collect medical history and treatment information across Latin America from more than 125,000 cancer and rare disease patients represented by ABRALE and Alianza Latina patient advocacy organizations. The announcement was made at the World Orphan Drug Congress USA, being held April 20 to 22, 2016.

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True North Therapeutics, a clinical stage biotechnology company developing novel therapies for Complement-mediated rare diseases, today announced the launch of the COMPASS Registry(www.compassregistry.org), a patient registry created by True North Therapeutics in collaboration with PatientCrossroads, for patients with Cold Agglutinin Disease (CAD) (and other autoimmune hemolytic anemias).

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From FasterCures: Decision-makers in research, industry, policy and health-care settings are actively seeking robust sources of patient data to inform patient-centered practices, policies and outputs. Scientific rigor throughout this process is of paramount importance to ensure solid outcomes. This report, as a part of the FasterCures Patients Count: The Science of Patient Input program, is aimed at establishing rigorous methods and reliable practices for understanding and incorporating patient needs into the process of developing, regulating and delivering new therapies.

Download the free report
PatientCrossroads, a leading provider of patient registries, has announced that the DuchenneConnect registry, led by Parent Project Muscular Dystrophy (PPMD), will be the first patient report registry to directly integrate electronic health records (EHR) data via patient portals.

The new capability was developed through a partnership between PatientCrossroads and PPMD. EHR integration with the DuchenneConnect registry supports the goal of including EHR data in the patient-powered research networks (PPRNs) that are members of PCORnet, the National Patient-Centered Clinical Research Network. DuchenneConnect PPRN participates in PCORnet, supported by funds from the Patient-Centered Outcomes Research Institute (PCORI).

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Over the past forty years, little has been learned about how to prevent, diagnose and effectively treat one of the most complex infectious diseases in the country -- chronic Lyme disease. But now, big data tools like patient registries have the potential to change that.

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PatientCrossroads announces that the Prospective Registry of Multiplex Testing (PROMPT), a research registry built on the secure online PatientCrossroads platform, has exceeded both its one-year and overall recruitment goals since launching in September 2014. More than 1,600 participants have joined the PROMPT study, which seeks to advance understanding of the hereditary risks for certain kinds of cancer. The registry’s year-one enrollment goal was 300 to 500 participants, and its overall recruitment goal was 1,000.

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Janis Dodge started finding the brown-red spots on her skin about eight years ago. They sprouted all over her body, in various sizes, and were enough to keep her away from the beach on a trip to Hawaii.

“They’re not pretty, I’ll be honest,” she said. “People would look and say, ‘What’s wrong with her?’”

Dodge, 62, a bank executive in Salem, Mass., was later diagnosed with mastocytosis, a rare disorder caused by a buildup of immune cells called mast cells in the skin, bone marrow, and organs. Chemotherapy treatments last year erased most of the spots, and now she takes a daily Zyrtec to minimize symptoms.

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PatientCrossroads, a leading provider of patient registries, announces that MyLymeData, a patient-powered research network, has achieved extraordinary enrollment in its first week—with more than 1,000 registered participants in the first week.

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Blueprint Medicines (NASDAQ: BPMC), a leader in discovering and developing highly selective kinase medicines for patients with genomically defined diseases, and PatientCrossroads, a pioneer in spearheading the adoption of patient-entered disease registries, today announced the launch of Mast Cell Connect, a patient registry to advance the understanding of mastocytosis and help speed the development of new therapies. Blueprint Medicines, which is developing a treatment for patients with systemic mastocytosis, is sponsoring the registry. PatientCrossroads' robust platform will be used to host and manage the registry, including patient privacy, data collection and access.

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PatientCrossroads announces the launch of its NEXUS Narcolepsy Registry, designed to describe the course of disease and treatment over time as well as to quantify the impact of this rare, chronic, debilitating neurological disorder on patients’ quality of life, daily functioning, productivity and healthcare resource utilization. A collaborative effort by the narcolepsy research and broader medical and pharmaceutical industries, the registry intends to track large numbers of people with narcolepsy over several years. It will publish its findings at medical meetings, with the goal of stimulating new research to aid the diagnosis and treatment of narcolepsy.

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