Cystinosis is a very rare inherited lysosomal storage disease presenting in infancy (95% of cases) with severe kidney disease but subsequently involving multiple organs (eyes, thyroid, liver, diabetes, muscle deterioration). Patients often present to paediatric nephrology services although multi organ disease requires multi-speciality input. Effective drug therapy and renal transplantation has improved the life expectancy of these patients.

This project comprises a provider selection process to commission adult and paediatric cystinosis services.

NHS England is seeking to commission a service to deliver cystinosis diagnosis and management advice through the publication of this provider selection process.

Services will be provided from 3 adult and paediatric hubs, either as a joint bid between two organisations (one covering adult services and one covering paediatric services) or as a single integrated service bid from the same organisation, covering both adult and paediatric services. Services will be selected to offer geographically equitable access to minimise patient travel times whilst also offering access to multidisciplinary resources. Services will support national networking of the highly specialised centres with the adult and paediatric centres working closely together to offer an integrated service and excellent transition of patients. The hubs will be required to work in a national network to support the development of national policies and protocols and to facilitate research.

The hub allocation model will be based on a regional lot breakdown as follows:

• Lot 1 - one hub for adult and paediatric cystinosis services to cover the NHS England population in the North of England

• Lot 2 – one hub for adult and paediatric cystinosis services to cover the NHS England population in the Midlands and northern areas of East of England

• Lot 3 – one hub for adult and paediatric cystinosis services to cover the NHS England population in the South of England and southern areas of East of England

Providers wishing to be considered for the delivery of these services will need to respond to the provider selection documentation and submit responses prior to the deadline stated in this notice.

NHS England is seeking to commission a service to deliver cystinosis diagnosis and management advice through the publication of this provider selection process.

Services will be provided from 3 adult and paediatric hubs, either as a joint bid between two organisations (one covering adult services and one covering paediatric services) or as a single integrated service bid from the same organisation, covering both adult and paediatric services. Services will be selected to offer geographically equitable access to minimise patient travel times whilst also offering access to multidisciplinary resources. Services will support national networking of the highly specialised centres with the adult and paediatric centres working closely together to offer an integrated service and excellent transition of patients. The hubs will be required to work in a national network to support the development of national policies and protocols and to facilitate research.

The hub allocation model will be based on a regional lot breakdown as follows:

• Lot 1 - one hub for adult and paediatric cystinosis services to cover the NHS England population in the North of England

• Lot 2 – one hub for adult and paediatric cystinosis services to cover the NHS England population in the Midlands and northern areas of East of England

• Lot 3 – one hub for adult and paediatric cystinosis services to cover the NHS England population in the South of England and southern areas of East of England

Providers wishing to be considered for the delivery of these services will need to respond to the provider selection documentation and submit responses prior to the deadline stated in this notice.

NHS England is seeking to commission a service to deliver cystinosis diagnosis and management advice through the publication of this provider selection process.

Services will be provided from 3 adult and paediatric hubs, either as a joint bid between two organisations (one covering adult services and one covering paediatric services) or as a single integrated service bid from the same organisation, covering both adult and paediatric services. Services will be selected to offer geographically equitable access to minimise patient travel times whilst also offering access to multidisciplinary resources. Services will support national networking of the highly specialised centres with the adult and paediatric centres working closely together to offer an integrated service and excellent transition of patients. The hubs will be required to work in a national network to support the development of national policies and protocols and to facilitate research.

The hub allocation model will be based on a regional lot breakdown as follows:

• Lot 1 - one hub for adult and paediatric cystinosis services to cover the NHS England population in the North of England

• Lot 2 – one hub for adult and paediatric cystinosis services to cover the NHS England population in the Midlands and northern areas of East of England

• Lot 3 – one hub for adult and paediatric cystinosis services to cover the NHS England population in the South of England and southern areas of East of England

Providers wishing to be considered for the delivery of these services will need to respond to the provider selection documentation and submit responses prior to the deadline stated in this notice.