Not For Profit Operations
Medialis... because real patients need Real World Evidence
We at Medialis have long been committed to the development of RWE which takes into consideration the needs of all the stakeholders whom they intended to serve. Through consultation and the use of innovative research techniques, we aim to enhance knowledge and inform best practice within RWE development and implementation. With this in mind, Medialis are committed to providing internal resources that fall within our Not for Profit operations.scroll down
Looking for collaborations and partnerships
We are looking for partnerships and collaborations with patients’ organizations and other non-profit projects, please contact us if you would like to join us.
Email: [email protected]
Collaboration with Metabolic Support UK
We are pleased to announce news of new our collaboration with a leading international patient organisation in Inherited Metabolic Disorders, Metabolic Support UK (formerly known as Climb). This alliance aims to improve knowledge and raise awareness of those living with a Metabolic Disorder.
This week, Medialis hosted a ‘kick-off’ meeting for its flag ship not-for-profit study investigating disease progression and quality of life in X-linked Hypophosphataemia.
Designed and sponsored, in its entirety, by Medialis , with the support and valuable insights of Metabolic Support UK, this study was approved on a voluntary basis by the UK’s independent research ethics committee (NHS Health Research Authority) in June 2019. This study is the first of an exciting pipeline of patient-focused research projects under development by our highly experienced Real World Evidence (RWE) Team, with expertise in multi-phase study design and study conduct throughout Europe.
Recruitment to the study is now open and detailed information about participation can be obtained by contacting our dedicated RWE Team at [email protected].
To further support raising awareness and sharing knowledge within this area, Medialis will be attending Metabolic Support UK’s Annual Conference: Improving Patient Access to Specialist Services and Treatments on Saturday 12th October. Members of the Medialis RWE Team will be available to discuss participation in our planned and ongoing research with those interested throughout the day.
We look forward to be able to provide further updates on recruitment and other progress in the coming months…
Information published by Medialis
Health and care research should serve the public interest, which means that we have to demonstrate that our research serves the interests of society as a whole. We do this by following the UK Policy Framework for Health and Social Care Research.
We use personally-identifiable information to conduct research to improve health and care. As a medical communications company we have a legitimate interest in using information relating to your health and care for research studies, when you agree to take part in a research study. This means that we will use your data, collected in the course of a research study, in the ways needed to conduct and analyse the research study. Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.
If you wish to raise a complaint on how we have handled your personal data, you can contact our Data Protection Officer who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO).
Our Data Protection Officer is Dr. Ravi Jandhyala and you can contact them at [email protected].
Medialis, researching and developing new strategies for generating Real World Evidence (RWE)
We at Medialis are excited to share with you details of our RWE original research pipeline.
We’ve committed our own time and resources to research approaches to RWE generation so we can be in the best position to advise our clients of the most appropriate ways to meet their RWE needs.
If you’d like to discuss how we can help in your organisation’s medical planning or RWE generation, please get in touch [email protected]
Volunteers Needed For A Research Study Investigating Disease Progression and Quality of Life in XLH
Volunteers Needed For A Research Study Investigating Disease Progression and Quality of Life in X-Linked Hypophosphatemia (XLH).
We aim to investigate disease progression and quality of life of adults living with a diagnosis of XLH.
- Have a diagnosis of XLH
- Be aged 28 or over
- Be able to read and converse in English
Participants will be asked to
- Take part in a study interview discussing their experience of living with an XLH diagnosis, taking approximately 1 to 1.5 hours
- Complete a series of quality of life questionnaires taking approximately 30-40 minutes each time
This study involves a total of 5 telephone calls over 12 months with a researcher from Medialis.