Three Levels of Connectivity

Level 1: Resource Discovery

Description	Contributes to	Technology Requirements	Access Condition Options	Usage Scenarios
At this level, the provider commits to openly publish online some standardised metadata about the offered resource, and hence make this available to the VP via the VP Index.	Resource discoverability via open metadata	FAIR Data Point specification, ERDERA metadata schema	Open Access	Discoverying registries in one country, or registries that involve a particular disease. For instance: Which repositories for a certain rare disease are available from Germany? What’s the contact information for a registry? Which registries cover a certain disease (by ORPHAcode)?

Level 2 - Content-based discovery

Prerequisite: Level 1 connectivity

Description	Contributes to	Technology Requirements	Access Condition Options	Usage Scenarios
At this level, content can be queried based on specific characteristics such as disease IDs, ages, phenotypes and so on, responding with yes/no or approximate record count information. The goal of level 2 is still the discovery -and not the use- of the data. The questions are answered against summary metadata and safe content of each catalogue.	Resource discoverability via controlled querying of catalogue summary info and/or safe record data	ERDERA Beacon2 v2/individual’s API endpoint	Open or authenticated user access, as per preference	‎ ‎
Level 2 – Querying at the catalogue level	Involves answering queries based on the the summary metadata about the catalog.	ERDERA Beacon2 v2/individual’s API endpoint	Open user access	Is the catalogue associated with the Marfan syndrome [ordo:Orphanet_558]?
Level 2 - Privacy-preserving queries at record level	Entails answering queries based on individual patient records within the catalog.	ERDERA Beacon2 v2/individual’s API endpoint	Open or authenticated user access, as per preference	Discovery of catalogs based on the existence of a cohort of patients of interest (patients that match query parameters such as disease codes, ages and so on) in sufficient numbers. For instance: Find catalogs based upon how many patients have Autosomal recessive polycystic kidney disease and had symptom onset before 8 years old. Is there an appropriate registry in my country to which collected information about certain patients should be donated? Within a certain registry, how many patients match less than 10 years old Duchene muscular dystrophy with gastrointestinal disorders?

Level 3 - Data analysis

Prerequisite: Level 1 connectivity. Optional level 2 connectivity.

Description	Contributes to	Technology Requirements	Access Condition Options	Usage Scenarios
At this level, the provider commits to support interrogation and analysis over the catalog’s content	Data reuse and analysis	UNDEFINED. Examples include: SPARQL, FAIR Data Train, Data available according to the Clinical And Registry Entries Semantic Model (CARE-SM)	Open or authenticated user access, as per preference	Efficient health system monitoring. For instance: Are there countries which are diagnosing much faster than others, based on certain key performance indicators (KPIs)? What drugs are used to track certain symptoms in different countries?