Challenge

No doubt in clinical research one of the most challenging and time consuming processes is the patient cohort identification for the research studies. Not only does it involve long hours spent on identifying potential institutional partners for the sponsors, but it also requires hundreds of men-hours on the other end, making sure that the patient cohort is still in reach, not to mention getting in touch with the potential participants and inviting them to take part in the study. The patient privacy and data security matters as well as overall transparency have rapidly risen in priority list for the sponsors when it comes to medical data handling. In order to avoid potential threats to study validation, it is of crucial importance to meet all the legal conditions.

Solution

Longenesis.Curator – centralized meta-data curation and discovery ecosystem with decentralized data storage – is operating as a mediator between sponsors and data controllers. The ecosystem provides an opportunity for clinical investigators, biobanks, laboratories, registries, and other institutions to showcase the scope of data or patient reach that could be used or engaged in research, without compromising the privacy of patients and data protection regulations. The sponsors, however, with just a few clicks can identify within the platform the overall pull of potential study participants or necessary data and start negotiations with the potential partner on data handling, pre-screening, pricing etc. without leaving the platform.

Implementation

Case study of potential collaboration funnel development for state-owned hospital

Partners: Children's Clinical University Hospital (BKUS) – a leading children healthcare institution in Latvia with a fully digitized hospital registry – partnered with Longenesis and its flagship product Longenesis.Curator. Each year around 15,000 patients receive inpatient medical care here, while the Polyclinic provides more than 300,000 outpatient visits, forming a noteworthy database.

Goals: To introduce a potential collaboration funnel with an aim to increase the amount of academic and industrial collaboration partners and study sponsors that can exist without the need of constant time investments.

Use case: Hospital specialists uploaded an anonymized meta-data overview on the patient admission information, including demographics, diagnostics and comorbidities, other admission-specific data, with ability to dive deeper into laboratory examination, intervention and manipulation, and treatment data in Longenesis.Curator.

Meta-data, coming in a variety of formats (csv, xml, json, etc.) was being transformed and visualized into a visual and queryable dataset, providing ability for potential collaboration partners to identify patient groups/datasets of specific need and get connected with the according centre investigators for further engagement through the platform. The data is being used for potential collaboration funnels through a platform that unites 20+ institutions, 10+ disease domains, and 1M+ patients to be engaged.