Managed Access

Managed Access Programmes

We deliver Managed Access Programmes that provide bespoke data collection, analysis of patient-reported outcomes (PRO) and reporting results to stakeholders


RDRP provide support to meet the unique demands of Managed Access Agreements (MAA) for rare diseases, such as lysosomal storage disorders (LSDs). We have established strong relationships with NICE, NHS England and expert clinical centres.

We offer a high quality, accurate and complete collection of patient-reported outcomes (PRO) data, data analysis tailored to your needs and reporting of outcomes.

Collection and analysis of patient-reported outcomes (PRO)

PRO Selection

Through our industry expertise, we provide advice on the planning and collection of PRO and Quality of Life data. We can support the licence application process for Quality of Life tools or obtain licences on your behalf. 

PRO Collection

Our Managed Access Agreement team will manage and collect PRO and Quality of Life data with patients or their parents/carers. We facilitate all aspects of data collection, from obtaining patients’ consent, to arranging interviews or patients’ focus groups.

PRO Analysis

Our experienced Research team can perform exhaustive analysis of PRO and Quality of Life data collected. We can then develop top-level through to fully comprehensive reports of the findings.

PRO Reporting

We deliver detailed reports of PRO data collected to all stakeholders, including NICE and NHS England. Our findings are communicated to the wider scientific community, both at conferences and as published outcomes.

Published MAA literature

MAA Patient booklet

Our Medical Communications team have developed patient guides for those participating on an MAA, to provide more information about the process and the assessments required of them.

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