Portal Development Working Group
The Portal Development working group created and run the Monogenic Portal.
About the Portal Development Working Group
The Portal Development group is one of the three working groups making up the Monogenic Network. This working group is tasked with the creation and running of the Monogenic Portal.
The Monogenic Portal aims to be a user-friendly web-based interface, through which clinicians and researchers around the world can contribute data and samples from families with Parkinson’s disease (PD), as well as single cases suspected to have a monogenic (Mendelian) cause for their PD. The portal will also be used to obtain the results of genetics studies of their patients, as well as anonymized global/aggregated data from other GP2 participating centers.
Milestones
Completed
- Developed the electronic case report form (eCRF) for monogenic patients
- Develop an online portal to manage monogenic cases database that is accessible by both administrators and investigators
- Develop an excel sheet with data dictionary for bulk upload of clinical data onto the monogenic portal
Active
- Continuous review of clinical data submission to monogenic portal and enhancement of the data collection/submission workflow
Not Started
- Integrate sample and result update notification to GP2 contributors through the monogenic portal (together with Monogenic Data Analysis WG)