News
First steps taken towards national Tuberous Sclerosis Complex Database
The first steps for a collaboration between Erasmus MC, UMC Utrecht, Stichting Tubereuze Sclerosis Nederland (STSN), Stichting TSC Fonds (formerly Stichting Michelle), Novartis and Lygature are taken to set up a national Tuberous Sclerosis Complex (TSC) database. On 24 October the kick-off meeting for the preparation phase was held.
This phase will study the possibilities to connect existing clinical patient databases and to jointly record new data. The goal of the preparation phase is to reach agreement on decision-making around data privacy, the procedure of consent by patients, a consortium, and the infrastructure of a database. This would give access to unique knowledge on the course and treatment of this rare condition.
Tuberous Sclerosis Complex (TSC) is a rare genetic disease which is prevalent in round 1000-1500 people in the Netherlands. The disease causes benign tumors to grow in the brain and on other vital organs such as the kidneys, lungs, heart, eyes and skin. 80-90% of the patients have epilepsy and the majority of patients with TSC experience behavioural problems.
The past years significant progress is made in understanding the underlying disease process and the treatment of TSC. However, there are still many gaps in our knowledge of TSC because of the complexity of the disease. A national database should facilitate access to data to support clinical decision-making and to optimize care and research in the field of TSC.
The centres of expertise for TSC within the Erasmus MC, the Sophia Kinderziekenhuis, the UMC Utrecht and the Wilhelmina Kinderziekenhuis as well as Novartis are involved. The project is financially supported by Novartis, patient association STSN and Stichting TSC Fonds. Lygature provides the project management and supports, as an independent non-profit organisation, the decision-making around bottlenecks such as data ownership and access, governance and data privacy. By having organisations with different perspectives (i.a. scientific, clinical care, patient and pharma) collaborate, a widely applicable database can be set up.
For further substantive information on TSC you can visit the STSN website.
For more information about the development of the national TSC-database and the collaboration, you can contact Tale Sliedrecht (tale.sliedrecht@lygature.org).