Transparency


All of our interactions are guided by what is right for the patient and we ensure transparency in all areas of our business and are committed to compliance and ethics.

We understand that transparency is essential to building and maintaining confidence and trust in our medicines and our work.

We abide by the Association of the British Pharmaceutical Industry (ABPI) Code of Practice for the Pharmaceutical Industry, which has detailed requirements to ensure member companies operate in a responsible, ethical and professional manner.

This includes how we work with healthcare professionals, healthcare organisations and patient organisations.

Please visit the ABPI website, known as Disclosure UK, for further information on payments made to healthcare professionals, Healthcare organisations, patient organisations, the public and journalists: https://search.disclosureuk.org.uk.

For annual disclosures relating to payments made by RRD to Irish healthcare professionals and organisations in previous calendar years, these will be made public on www.transferofvalue.ie where appropriate.

 

Sponsorship and financial support of UK patient groups and charities

Recordati Rare Diseases is pleased to have provided support to the following Patient Organisations and charities from 2021 to 2023 inclusive

 

2023

Name of the patient organisation Description of support Amount
Pituitary Foundation Grant - Cushing’s Disease Day £7,000
Pituitary Foundation Grant - Core Frontline Patient & Family Service, Pituitary Life Magazine, Digital infrastructure project £4,000
Cystinosis Foundation UK Honorarium £150
Cystinosis Foundation UK Expenses £158
Lymphoma Action UK Grant - Healthcare Professional Education project £5,000

2022

Name of the patient organisation Description of support Amount
British Porphyria Association Grant - Patient Wellbeing Project £2,000
British Porphyria Association Grant - Connect 2021 Virtual Event £3,000

2021

Name of the patient organisation Description of support Amount
Lymphoma Action Grant - Digital Patient Support Programme £4,800

 

Company reports

 

Methodological Note


This Methodological Note is for 2023 Transfers of value for Recordati Rare Diseases UK Ltd (reported 2024)

 

Transparency is fundamental to ensure a positive working relationship between the pharmaceutical industry and healthcare providers for relationships that best serve the interests of patients. Recordati Rare Diseases (also referred to as 'the Company') has prepared this document to outline the Company's interpretations and assumptions made, and methodologies used in complying with requirements to disclose payments to patient organisations under the Code of Practice 2021 administered by the Prescription Medicines Code of Practice Authority (PMCPA).

Based on a complete dataset, Recordati Rare Diseases has endeavoured to disclose to the ABPI for publication on its central platform all direct and indirect Transfers of Value (ToV) made between 1 January 2023 and 31 December 2023.

Recordati Rare Diseases first identified all possible sources of information within the Company’s finance system and all ToV made by the Company to patient organisations. This list was compared to an internal record of all contracts/agreements and payment requests related to patient organisations held for compliance purposes, in order to omit any loss of information. Any inconsistencies between the two lists were resolved through internal consultation.

In relation to cross border payments, RRD internal policies require that all engagements with UK Patient organisations made by a non-UK company affiliate are registered with the UK affiliate, prior to any engagement, for ABPI compliance and ToV approval. This information was then compared with the contracts and invoices for each payment and information provided from the finance team from the relevant affiliate. Any inconsistencies between the documents were resolved through internal consultation or by contacting the relevant payee to clarify the situation regarding the inconsistency.

 

What is a Transfer of Value (ToV)? 

The ToV data are based on any direct or indirect monetary or benefit in kind made, whether for promotional purposes or otherwise, in connection with the development and/or sale of prescription only medicinal products for human use. 

Transfer of value includes, but is not limited to, payments of fees for services, consultancy and associated expenses, registration fees, meeting and event sponsorships, grants, donations, travel, accommodation.  Expenses incurred during the execution of a contracted service (e.g. travel and accommodation) are also considered ToV

 

Who is the recipient of the ToV? 

Recordati Rare Diseases considered the recipient to be the contracting entity. Hence the recipient is the contracting party as stated on the legal contract executed between Recordati Rare Diseases and the counterpart.

 

What date is assigned to a ToV? 

Recordati Rare Diseases has made its disclosures relating to cash payments by reference to the payment date. As a consequence, a fee for a service or provision of a grant or sponsorship provided during 2022 and paid during 2023 has been registered on the 2023 ToV listing. If the exact date for a specific transfer could not be obtained by the individuals registering the ToVs, the transfer was registered as close as possible to the actual payment date.

Payments made after December 31, 2023 for events that took place in 2023 will be included in the 2024 report.

 

Currency 

Recordati Rare Diseases has made its disclosures in Sterling. For those payments made in any other currency, the Company used the average exchange rate with Sterling at the date of the transaction, if known, or from the month of transaction, or engagement date. Exchange rates were obtained from: https://www.exchangerates.org.uk/  

 

Recordati Rare Diseases has made its disclosures relating to direct ToVs exclusive of all applicable taxes and VAT.

IE-NPS-0145 August 2024