Niemann-Pick GUID
The Niemann Pick Global Unique Identifier (NP GUID) facilitates the controlled sharing of participant records between research studies to reduce timescales and enhance results.
A number of disparate data repositories exist to capture the natural history, genetics and trial outcomes of Niemann-Pick (NP) diseases patients. Whilst generally straight forward to establish, standalone repositories can quickly become data silos severely limiting their potential value. The use of a Global Unique Identifier (GUID) facilitates the linking of Niemann-Pick patient data across disparate data repositories.
Given that Niemann-Pick diseases are categorised as rare diseases with quality data scarce, the ability to connect data from multiple sources can improve research. By implementing a standard NP community wide identifier, NP data sets can be linked, merged and aggregated by approved researchers.
The NP GUID creation tool is made available to approved research organisations. Study coordinators should enter the Given & Family Names, along with the Sex at Birth and the Date of Birth of participants. The Submit button generates the NP GUID for the participant, that can be copied to the clipboard for subsequent data entry purposes. Care should be taken to ensure that consistent family and given names are used across studies to ensure accurate downstream matching.
The generation of a NP GUID to facilitate the linking, merging or aggregating of Neiman-Pick data, should only be undertaken in compliance with local and global privacy legislation and ethical considerations. Organisations wishing to make use of GUID’s should be transparent about their use, providing written information to participants, including the organisations identity and any registrations with Ethical Bodies or Data Protection Authorities.
The explicit, informed consent of participants shall be captured prior to the generation of a NP GUID. Records of consent should be held as documentary evidence as a minimum, for the duration of the trial, study or registry. It should be as easy for a participant to withdraw consent should they wish to do so, as it was to initially grant it.
The adoption of privacy preserving techniques enables a consistent GUID to be generated per patient based on the input of a standard set of personal data. The resulting GUID’s are unique to the patient but importantly, cannot be reverse engineered to reveal their true identity.
The development of the Niemann Pick Global Unique Identifier (NP GUID) has been made possible by funding from the Ara Parseghian Medical Research Fund.
The INPDR NP GUID standard can be downloaded here.
If you require any clarification or further information about the Niemann Pick Global Unique Identifier (NP GUID), please contact info@inpdr.org