Patients are gaining a more active role in health care systems. The move toward patient-centered medicine aims to provide the best health care for each individual patient, taking his or her goals, preferences, and values into account. Doctor–patient relationships are changing, and concepts such as shared decision making and patient empowerment are becoming a reality. Patient advocacy groups opinions must have greater influence on the decisions that affect them, which is reflected in the phrase “nothing about me without me”.
There are many opportunities for patients to participate more actively in the entire research process. And World CDG organization is at the forefront of patient driven research.
Your Role in our CDG Research, includes
- Identifying research priorities
- Leading and designing research
- Participating in qualitative and quantitative research studies
- Improving access to clinical trials
- Helping us to assess patients’ experience with respect to participation in clinical trials
- Facilitating information to participants about research and study results
- Disseminating and applying research findings
Learn more on Patient involvement in research
- Learn more about understanding and developing Patient and Public Involvement in health and social research.
- The EUPATI Guidelines on Patient Involvement in Research and Development aim to support the integration of patient involvement across the entire process of medicines research and development with regulatory agencies, health technology assessment (HTA) bodies, ethics committees and the pharmaceutical industry.
- From deciding FOR patients, to deciding WITH patients
- Discover why patients’ voices matter and how they have a voice in medicines R&D
Impact of your participation within our CDG research
The following projects have been inspired on direct needs shared by families, and successfully published.
- Artificial Intelligence (AI) in Rare Diseases: Is the Future Brighter?
- CDG and immune response: From bedside to bench and back.
- Keeping an eye on congenital disorders of O-glycosylation: A systematic literature review.
- Patient and observer reported outcome measures to evaluate health-related quality of life in inherited metabolic diseases: a scoping review.
- The challenge of CDG diagnosis.
- An Electronic Questionnaire for Liver Assessment in Congenital Disorders of Glycosylation (LeQCDG): A Patient-Centered Study.
- CDG Therapies: From Bench to Bedside.
- Cardiac complications of congenital disorders of glycosylation (CDG): a systematic review of the literature.
- Liver involvement in congenital disorders of glycosylation (CDG). A systematic review of the literature.
- Public and patient involvement in needs assessment and social innovation: a people-centred approach to care and research for congenital disorders of glycosylation.
- Immunological aspects of congenital disorders of glycosylation (CDG): a review.
"The greatness of a community is most accurately measured by the compassionate actions of its members."
by Coretta Scott King
To find out more about our impact on CDG research and therapeutic development, head to the different sections of our website.