Institute of Neuroscience

Staff Profile

Dr Cecilia Jimenez Moreno

Research Associate

Background

BSc (with Honours) in Physiotherapy (Universidad  del Valle de Mexico)

PGCert in Clinical Research (London School of Hygiene and Tropical Medicine)

MRes in Neuromuscular Diseases (Newcastle University)

PhD in Human Genetics (Newcastle University) 

PRINCE-2 Certified as Project Manager (UK)

Always involved and interested in clinical trials design and development. The main current disease of interest so far has been myotonic dystrophy type 1 and the focus of my PhD was the validation of outcome measures in this disease.

My current research focuses on patients' preferences elicitation methods and patients' participation in the decision making process of their health care and treatment. This is not new are of research but in the last years, it has become even a political necessity for regulatory bodies and health care systems around the world. As rare diseases, patient preference studies in neuromuscular disorders have a particular approach that needs to be investigated.

To read more:

Patient Preferences in the Drug Development Process

NMD PREFER Case Study - First phase completed






Research

Current project of research: coordinating the prefer case-study in Neuromuscular Disorders.


www.imi-prefer.eu


Including the patient perspective

PREFER will establish recommendations to support development of guidelines for industry, Regulatory Authorities and HTA bodies on how and when to include patient perspectives on benefits and risks of medicinal products. 

Over the next five years, we will run patient preference studies in both academic and industry settings. Our experience will provide a better understanding of what will be a recommended best-practice approach to patient-preference studies. We will also show how patient preference studies can give valuable information to support decision making for regulators and HTA bodies.

PREFER is divided into four 'work packages'. The methodology work package looks at the concerns stakeholders have around the use of patient-preference studies. Based on what they find, they will make recommendations about what methodologies to use in case studies that the  case study work package will design and carry out. After evaluating the case studies, Finally, the recommendations work package will take over and draft recommendations based on the work. The management work package will make sure this work is done on time.

Publications