Currently, there is no collaborative environment for PKD patients to transmit or request information from individual patients. Information is posted in existing Facebook PKD support group pages and patients accessing them randomly.
Thus, a virtual space for safe sharing of individual patients' information will be created in collaboration with PKD Facebook group. The creation of a virtual safe space through which patients will receive alerts on activities carried out by the group will be of added value for patients' communication. Activities to be conducted will include a set of surveys to assess % of PKD patients genotyped, Patients' outcomes (QoL) and concerns.
More information coming soon!