NU2053 - Supply of a Rare Disease Recruitment Portal (RDRP)

Newcastle University are looking to procure a Rare Disease Trial Recruitment Portal (RDRP) as part of the Rare Disease Trial Acceleration Platform (RD-TAP) project, funded by LifeArc.

The LifeArc Centre for Acceleration of Rare Disease Trials (www.lifearc.org/project/lifearc-translational-centres-for-rare-diseases) brings together a consortium of three universities from across the UK. Newcastle University, Queens University Belfast, and University of Birmingham are pooling their expertise in a partnership coordinated by Professor David Jones, Professor of Liver Immunology at Newcastle University.

Globally, there are more than 300 million people living with rare diseases (RD), yet clinical trials for them are often challenging and can be a major limiting step in getting new treatments to patients. This £12M centre will develop a UK '4 nations' approach to deliver trials of new treatments using 'one stop', patient friendly models with a focus on improving the efficiency of RD trials and increasing the number of opportunities for patients to take part.

The research team will create a RDRP and will design and deliver trials in partnership with patients. This will speed up the delivery of clinical trials for people with RDs and enable more rapid approval of new therapies for use in the NHS.

The contract reference is NU/2053.

Should you be interested this project, please email Ola.Smith@newcastle.ac.uk and Jessica.Watson@newcastle.ac.uk for the full briefing document.

The deadline for expressing an interest is 28th November 2024 at 2pm GMT. To do so, please email Ola.Smith@newcastle.ac.uk; Jessica.Watson@newcastle.ac.uk

Please note that Newcastle University is not a contracting authority for the purposes of the UK Public Contracts Regulations 2015 and the Concession Contracts Regulations 2016, this will not apply to this Prior Information Notice or any subsequent tender activity as an outcome of this engagement.

Additional information:

As part of the RD-TAP project, funded by LifeArc, Newcastle University intends to purchase a Rare Disease Recruitment Portal (RDRP). Prior to advertising an Invitation to Tender (ITT) the University has issued a PIN for the purpose of engaging with the supply market to understand the different systems available to fulfil the needs of the project. The information gained from the PIN will be used to inform the specification contained in the ITT.

We aim to develop the UK's first Rare Disease Recruitment Portal to facilitate equitable, patient-driven recruitment into RD trials across the four UK nations. A user-friendly RDRP, will be part of the Trial Acceleration Platform build by our LifeArc-funded Translational Rare Disease Centre (TRDC).

The overall ambition is to deliver a unique, UK-wide, fully patient-centered RDRP which will address the challenges faced in all RDs of recruiting to time and target, enabling equitable patient participation in clinical research, making use of existing patient data from NHS databases, and applying FAIR data principles. Please see Appendix A (in the briefing document) for further detail about the portal.

The portal will also be required to link with secure data environments within the NHS. This includes existing registry data to specific NHS digital, NHSCNI and DHSC products, housed on a trusted and secure data environment. The portal will also look to integrate with NIHR's 'Be Part of Research' initiative) https://bepartofresearch.nihr.ac.uk/), wherever possible. Interoperability of data will be key to the success of this project.