100,000 patients, suffering from a chronic condition, actors in research: this is the objective of the ComPare community. Set up at the Assistance Publique-Hôpitaux de Paris (AP-HP), it aims to accelerate research on chronic diseases and to put the unmet needs of patients back at the heart of this research.
The “community of patients for research” (ComPaRe) was created in 2017 by the Assistance Publique-Hôpitaux de Paris (AP-HP). On a voluntary basis, it offers the opportunity to adult patients suffering from a chronic condition to participate in clinical research on aspects that are poorly taken into account concerning them. Their involvement is based on the simple response, every month, to online questionnaires, via a AP-HP secure platform (validated by the CNIL).
The aim is to advance research on poorly understood or poorly taken into account aspects of chronic diseases (from the patient’s point of view), whether rare or frequent, according to Prof. Philippe Ravaudhead of the clinical epidemiology department at the Hôtel-Dieu and founder of the ComPaRe project.
Seven cohorts have been set up since 2017: diabetes, high blood pressure, chronic low back pain, Verneuil’s disease, vitiligo, kidney disease, vasculitis. Four other cohorts are planned by the end of 2018.
Change scale
It is essential to have a large number of patients, because this will make it possible to highlight relationships between different aspects of chronic diseases that researchers cannot currently see because there are too few patients in the studies.
The average size of clinical research trials is, in fact, around a hundred patients and ComPaRe aims to greatly increase the number of patients analyzed and to cross-reference the questionnaires completed each month by the patients with other data. bigdata”.
For the moment, these data are those contained in the health insurance databases (SNIIRAM) and those of various already existing registers but, in the future, it is planned to cross them with those of patient registers in d other countries and those collected by connected objects worn by patients.
ComPaRe will also make it possible to accelerate research by facilitating the identification and recruitment of patients to whom we can offer priority inclusion in a study, it facilitates the circulation of anonymized information between researchers, it simplifies administrative procedures and reduces costs
The patient actor of research
All adult patients who have one or more chronic illnesses, ie a condition that lasts and requires medical follow-up for more than six months, can join the ComPaRe community. The chronic diseases concerned are, of course, common diseases such as diabetes, high blood pressure, or chronic low back pain, but also less common diseases such as cancer and vitiligo, and rare diseases such as Verneuil’s disease.
Currently, just over 7,600 patients suffering from one or more chronic diseases have agreed to answer a questionnaire every month which lasts 10 to 30 minutes: heaviness of treatment, side effects, diet… all aspects of the disease are studied, including topics that are not sufficiently addressed from the patient’s point of view, such as quality of life. This community of patients will make it possible to carry out research, both on aspects common to all of these diseases, or on aspects more specific to a chronic disease.
“This program is intended to encourage patients to become actors in research, a crucial step to enable us to better direct research and reduce costs”, declared Professor Ravaud during a press conference organized by the AP-HP (APM). If this community Compared is intended to improve research, it is also an opportunity to put patients back at the heart of research and to make them actors in this new “medical movement”.
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