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Registries for ALL – Redesigning Patient-Researcher Relationships with an Open-Source Database

By Kristie Wang, Ashoka Changemakers

Registries for ALL – Redesigning Patient-Researcher Relationships with an Open-Source Database

Registries for ALL (Reg4ALL) is part of a movement to transform the relationships between health data, patients, and researchers. As “the world’s first ever participant-controlled, cross-disease registry for health and disease data,” the Reg4ALL platform enables patients to share their health data and connect with researchers who need participants for clinical trials.

The platform is especially promising for patients with rare diseases and would help researchers achieve breakthroughs faster, according to Reg4ALL.

At present, there is no other cross-disease registry. “Disease advocacy organizations have attempted registries, but lacking committed researchers, they often do not meet their data usage goals, and are hard to sustain, financially,” according to Reg4ALL.

“Commercial organizations also attempt registries, but they find it difficult to sustain an environment of trust. And too often, both advocacy and research communities take a single-disease approach.”

Not Just Another Incomplete, Narrow Disease Registry

Reg4ALL believes that a single, patient-driven database that encompasses all diseases is required for widespread adoption of the platform. Reg4ALL plans to use “viral loops” to attract participants by fostering an ecosystem of cooperation and trust.

If it is implemented on a large scale, the registry has the potential to allow patients to drive research. With more individuals participating in clinical trials, patients may begin “driv[ing] the clinical questions in trials that they believe will benefit them most,” according to Reg4ALL.

Opening up a two-way relationship between patients and researchers will also result in more diverse sets of clinical trial participants, according to Reg$ALL. “They will not just be the healthiest quartile of white men, but they will include minorities and other underserved communities.”

Ultimately, Reg4ALL hopes the registry will accelerate the development of drugs and therapies at a lower cost to patients.

Thus far, Reg4ALL users number in the thousands, and the registry’s first clinical trial and data-based study are preparing to use the system. Reg4ALL hopes to reach tens of thousands of patients by the end of the year, and millions by 2015.

Business Plan has Options for Revenue Models

Reg4ALL is being piloted by the nonprofit Genetic Alliance. Its launch was funded primarily through a grant from Sanofi.

It plans to grow recurring revenue that will sustain the project in the long term by charging a fee to researchers for access to data. “Our strategy is to price access to data at price points vastly below current market rate,” according to Reg4ALL.

“We are looking to iTunes and app store models—volume over high prices. At the present time, a pharmaceutical company might pay between $5,000 and $40,000 to accrue one individual into a clinical trial.

“We hope to make that price point less than $10 per person, or even better, a sustaining subscription model like Pandora or LinkedIn.”

Health researchers have long lamented the information asymmetries that plague health systems, in both mature and emerging markets. Reg4ALL could transform the way patients engage with researchers, and help more patients access life-saving treatment by making health data and information about clinical trials easier to assemble.

Editor’s Note:

This story is part of a series about innovative business models that are solving the systemic health problems of different markets around the world. This initiative was selected as a finalist in the Transforming Health Systems: Gamechanging Business Models competition, launched by Ashoka Changemakers and Boehringer Ingelheim. Visit the competition page to vote for your favorite finalist before June 18.

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