PatientCrossroads Announces Partnership to Offer Latin America Cancer and Rare Disease Registries

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

“Patient-reported outcomes are critical to improving access to cancer and rare-disease treatments worldwide,” said Merula Steagull.

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.

Through this partnership, patients from 21 Latin America countries may enter their health data into an online registry and consent to share their de-identified information, which is openly available to research investigators and disease stakeholders working to improve diagnoses, treatments, and quality of life for patients. Patients control their sharing and privacy preferences, and access to any patient identifying information is strictly controlled by registry staff.

“Patient-reported outcomes are critical to improving access to cancer and rare-disease treatments worldwide,” said Merula Steagull, board member of Alianza Latina and founder of the ABRALE advocacy organization. “Through this partnership, we will help advocacy organizations directly reach the patient community and better understand the needs of the patients they represent.”

Latin America lacks collaborative initiatives that can present the patient voice to regulators. The new partnership will enable patients who want to share their medical history to actively help identify gaps in care and to receive relevant information that can improve their knowledge and awareness about their diagnoses and health conditions.

“We will start in Brazil with ABRALE, and then expand the program to other patient groups in 21 countries across Latin America,” said Alexandre Melo, CEO of Next Sistemas, a Brazilian information technology company focused on healthcare data analysis solutions. “It will be important to compare the local needs of patients within the different countries.” Next Sistemas will act as PatientCrossroads’ partner in Latin America and will provide local support, marketing, outreach, and registry coordination services in the region.

Alliance Program Addresses Latin American Patient Ecosystem
The program will be offered to patient organizations across Latin America. The organizations will work with local hospitals to help with data entry and to educate patients and researchers about the program. Data from Latin America will be combined with existing data collected by the PatientCrossroads CONNECT registry to provide an accessible, global view of cancer and rare disease in a single database.

“Much of the Latin America medical community relies on paper records to track patient medical histories, making it difficult for researchers and pharmaceutical companies to access the Latin America market,” said Kyle Brown, CEO and founder of PatientCrossroads. “The lack of a common electronic health record in many Latin American countries provides an opportunity to leverage a growing trend toward collecting medical information directly from patients through registry programs.”

PatientCrossroads and Next Sistemas will provide a resource to better understand local needs and to help bring needed treatments to the emerging Latin American market. As treatments come to market, pharmaceutical companies will be able to leverage the data collected to inform approval decisions or support post-approval surveillance. Patients will be the central voice in collecting and distributing information that can improve the lives of cancer and rare disease patients across Latin America and the world.

For pharmaceutical companies, emerging markets represent a large untapped opportunity. According to a 2013 survey of executives from more than 25 of the top pharmaceutical and generics companies conducted by PwC’s Strategy&, by 2018 nearly 30 percent of pharmaceutical company revenue will come from emerging markets, including Latin America. Market access was identified as the biggest obstacle for pharmaceutical companies entering the Latin America market.

At the same time, governments in Latin America are struggling to approve new treatments. Latin American regulatory agencies have very limited resources for assessing the safety and efficacy of new products, some of which are very complex. For this reason, they depend on the FDA or the European Medicines Agency decisions to grant approval (Homedes and Ugalde, 2015).

ABRALE, the Brazilian Lymphoma and Leukemia Society, is a non-profit organization established in 2002 by patients and their families. Its mission is to improve access to ideal treatments and contribute for a better quality of life for people with blood cancers in Brazil, through research, awareness campaigns, advocacy, and support to patients and their families.

About Red Alianza Latina
Red Alianza Latina is a network project led by ABRALE that seeks to provide its members with tools for continuous capacity building, coaching and an annual conference, thus, helping patient organizations in Latin America widen the impact of their programs.

About PatientCrossroads
Since 2005, PatientCrossroads has pioneered the use of patient registries to accelerate therapeutic development and empower patients. PatientCrossroads registry programs connect patients with researchers, advocates and industry organizations working to understand or treat specific diseases and conditions. Dedicated to openly accessible registry programs, PatientCrossroads has been recognized for its efficacy through national and international awards and partnerships. Its groundbreaking CONNECT patient registry platform allows de-identified patient information from multiple disease to be shared and used to research diseases, find new treatments, and better educate and support patients and their families. For more information, visit

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Kyle Brown
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