Patient Registries
Patient registries constitute key instruments for the development of clinical research in the field any field, and the improvement of patient care and healthcare planning as well as social, economical and quality of life outcomes. They are the appropriate way to pool scarce data without bias for epidemiological and/or clinical research. They are vital to assess the feasibility of clinical trials, to facilitate the planning of appropriate clinical trials and to support the enrolment of patients and to assess the impact of new interventions.
Registries of patients treated with orphan drugs are particularly relevant as they allow the gathering of evidence on the effectiveness of the treatment and on its possible side effects, keeping in mind that marketing authorisation is usually granted at a time when evidence is still limited although already somewhat convincing.
When established, databases should be maintained and their use optimised through exchange of data between interested parties. However, the status of such databases is not well defined and most institutions have no written policies or agreements regarding this activity.
They are of high interest to researchers, industrial partners, healthcare professionals, patients and patient organisations, and, ultimately, for the community. It is difficult to separate research conducted by the non-profit and for-profit sectors, as researchers from both sectors are often involved in the same projects. Whilst this enables effective technology transfer, it also gives rise to concerns about conflicts of interest. There is a need to promote confidence in research based on data collections.
qClinical is a fully Internet-based system for managing patient registries. By contrast to existing systems developed for the same purpose. We are ideally positioned to deliver smart Patient Registries which are global, drives the patient to better care and gives accurate data to researchers.
qClinical is a universal platform that doesn’t require any reprogramming from one trial to another. Setting up an case report form (eCRF) for a medical trial becomes therefore a matter of configuring the system via online interface rather than a matter of programming.
Universal data structure and user-configurable interface allow support of eCRF with any number of subject visits, any organization of pages within a visit form, any placement of fields of different types, various user roles and specific access rights of each role to interface elements.
In addition to standard features of a modern eClinical system such as randomisation, patient diaries, alerts and patient surveys, it can directly capture point-of-care data obviating the need to introduce these data again.