REHPA - The Research Database for Rehabilitation and Palliative Care for people with life- threatening diseases in Denmark
The overall aim is to contribute to the development of evidence-based practice by sharing and developing knowledge. The object is also to design protocoled-based studies within the field of rehabilitation and palliative care for people with cancer or other life-threatening illnesses. Data are collected with the focus on improving and increasing evidence about the physical, psychological and social need and effects, which this disease group experience under or after treatment.
As one purpose of REHPAs research activities, the centre offers residential rehabilitation courses for people with cancer or other life-threatening illnesses. The residential courses are designed as protocoled studies and are located in Nyborg. The specific target groups for each course change over time depending on the current research project.
It is a priority that knowledge obtained at REHPA, in cooperation with municipalities and regions, is transferrable to clinical practice. In order to apply and disseminate the information gathered at REHPA, data are stored in a research database. The research database contains systematically collected data from participants offed a residential courses and a follow up 12-14 weeks after first visit. Data are collected with the focus on improving and increasing evidence about the physical, psychological and social need and effects which this disease group experience under or after treatment and further to explore if this group is offered optimal rehabilitation across sectors.
The database also aims to make basic data accessible to future sub-projects which are in line with the overall purpose. These sub-projects will have to obtain all necessary data approvals separately. Transmission of data from the REHPA database will follow the procedure for data disclosure in accordance with legislation in the area. For more information please see www.rehpa.dk or contact REHPA by mail: Rehpa@rsyd.dk
Description of the cohort
Participants at REHPA vary, as the rehabilitation residential courses have different purposes, e.g. focus on return to work, increasing the physical activity level of the participants, generic or disease specific. The course can also offers a partner session where the participant can invite a significant other to join the course.
In- and exclusion criteria are set by the research team and the clinicians at REHPA prior to each rehabilitation course.
The primary inclusion criteria are people over 18 year of age, who speak and understand Danish, who have rehabilitation needs and who are referred from their own physician or a hospital doctor.
Data and biological material
The collected data contain information on civil registration number, address, telephone number, e-mail address, diagnosis, diagnosis codes, disease status, comorbidities, disease treatments, diets, food allergies, employment status, education, civil status and socio-economic data. Furthermore, patient-reported outcomes are collected in the form of questionnaire data, which include data concerning health, quality of life, lifestyle and demographics. In addition, data from qualitative interviews are also obtained.
Future research will include Danish registers.
Collaborating researchers and departments
REHPA's partners and collaborators are listed on the website, please see www.rehpa.dk for more information.