RARA outpatinet clinic
| Reference number | |
| Coordinator | Karolinska Universitetssjukhuset - Klinisk Genetik |
| Funding from Vinnova | SEK 519 200 |
| Project duration | August 2016 - February 2017 |
| Status | Completed |
Important results from the project
The RAREclinic is an innovative solution that has been approved by the Karolinska University Hospital management, The clinic will coordinate Highly specialized care and everyday Health of patients with rare diseases and polyhandicap. It will be a one-stop shop for the diagnosis and treatment of patients with rare diseases of all ages. The clinic will be highly multidisciplinary and have several different activities including quality registers, training programs for other health care providers and patients, treatment recommendations, telemedicine and other digital solutions.
Expected long term effects
Patient benefits; More uniform diagnostics that will lead to better health care Increased opportunities for personalized medicine Minimizing the number of travels and health care contacts More uniform and equitable referral management Economic benefits; Comprehensive planning and care for patient groups More efficient Health care More efficient diagnostics Benefit to Karolinska; Improved Medical Care Strengthen ability to manage ERN mission Reinforced triple helix cooperation Increased number of referrals and cross border patients
Approach and implementation
The organization is designed and Karolinska CSD holds the pilot. The RAREclinic will open in the Q-building in May. Staff recruitment is ongoing. Patients with skeletal dysplasias and rare syndromes are invited. Baseline measurement of consumption of care and patient benefit using PREM and PROM will be used. and patients will be registered in the new Quality register. Development of care and digital solutions will be done in close collaboration with patients. We work with Innovationsplatsen, KI LIME and SCC to develop measures of economic outcomes as well as Quality & Patient safety.