Research programme: Epidemiology

The aim of this programme is to obtain insight in various relevant epidemiologic parameters, determinants of disease onset and progression, and public health indicators. Most of this information can be retrieved from the Integrated Primary Care Information (IPCI) database, managed by the department of Medical Informatics of the Erasmus Medical Centre. This is a longitudinal observational database with data from electronic patient records of 150 GPs, covering 800,000 patients in the Netherlands. The IPCI database, as well as data obtained from other resources (e.g. patients participating in trials and familial aggregation studies), will be used to study issues dealing with phenotype characterisation, disease course, prognostic factors and cosegregation of other pain syndromes in families of CRPS patients.

First results on incidence of CRPS
First results from this research line were published in Pain. This study revealed:
• an incidence of 26.2 per 100,000 person years, which means that approximately 4300 people a year develop CRPS in the Netherlands;
• the highest incidence is in women in the age category of 61-70 years;
• that arms are affected more frequently than legs;
• that a fracture is the most common precipating event.

See for the complete study: De Mos M, de Bruijn AG, Huygen FJ, Dieleman JP, Stricker BH, Sturkenboom MC. (2006) The incidence of complex regional pain syndrome: A population-based study. Pain 129(1): p.12-20

Ongoing research
Patients suffering from CRPS can experience several complaints (pains, stiffness, los of strength). These complaints can result in problems or limitations in carrying out daily activities like standing, walking writing and getting dressed.
A better understanding of the relationship between the complaints and limitations is necessary to decide the focus of future research.
For this purpose 650 CRPS patients have participated in a survey research on this matter. This research also addresses the question which effects CRPS has on peoples’ everyday lives (for example: sports, recreation, work, family role).

Co-ordination
This research programme is co-ordinated by Dr. Miriam Sturkenboom (Erasmus MC) and Dr. Han Marinus (LUMC).