IMPACT



 

The condition of the muscles of patients with cystinosis is important for the course of this disease. Regular exercise builds up muscles and can have a positive impact on life expectancy and quality of life.

IMPACT is intended to show whether regular training with vibration plates can increase the muscle strength of cystinosis patients. This is to prevent serious medical interventions in the long term and improve the quality of life. In the course of cystinosis it is common that the muscles decrease. This also affects the muscles responsible for swallowing and breathing.
There is evidence that exercise can prevent this course. However, patients often find it difficult to exercise regularly because their illness is already very time-consuming (for example, taking medication, dietary supplements, visits to the doctor). With the training concept from IMPACT, training at home and the short training times should facilitate integration into everyday life.

Our ambitions with IMPACT:
·        Affect the course of the disease positively
·        Increase quality of life
·        Build up the muscles

·        Establish the training as a health insurance benefit

The planned training plan for the patients:
The training plan contains up to 10 short training units per week that can be carried out at home. A training session lasts about 10 minutes and consists of four simple exercises.

Before the study, participants receive instructions on the training plan and regular supervision during the training phase.

Participants are randomly assigned to the intervention or control group after the start of the trial. The intervention group carries out the training on the Galileo vibration plates, which is provided free of charge. After completing the measurements, the control group is given the opportunity to use the vibration plates (without costs).

If it turns out that the patients can integrate the training into their everyday life and benefit from it, the training should be regularly offered to all patients with cystinosis over the health insurance benefit.