Disease states with prolonged fatigue - what is the need of researching?
Research Council wants suggestions for research on diseases with prolonged fatigue. We primarily to patients and their families, but also to clinicians. The deadline for comments is Tuesday, 3 May 2016.
Prolonged and pervasive fatigue, with or without pain, is a serious and relatively common disease state. The state has several designations, as CFS (Chronic Fatigue Syndrome) and ME (myalgic encephalopathy). It is characterized by the disease causes are complex and unclear, it is not found biological markers for the condition and that there is scientific disagreement about the symptom-based diagnostic criteria. As a result, it also lacks good treatment to patients.
Directorate of Health estimates that there are between 10,000 and 20,000 patients with CFS / ME of varying severity in Norway. Many experience major health problems for a long time and feel bad attended by health care. Research activity has been increasing in recent years, both in scope and approaches, but the need for more research and better knowledge of the CSF / ME is still large.
Why this approach?
There are several ways to identify knowledge needs. Health programs at the Research Council is now trying out an approach which in Norway has been named "The needs identified research". There should be research which provides knowledge that particularly sought by users of health services, and that is to be employed in the service of relatively short term. We therefore want input on research needs which could form the basis for new research projects.
What we need new research when it comes to CFS / ME? Research addressing this question primarily for patients and their families, but also to clinicians. We invite you to submit proposals for research by completing this form by Tuesday, May 3, 2016.
What happens after May 3?
Research will convene a broad-based user panel, consisting of patients, families, health professionals, health authorities and researchers who will provide advice on research needs and what is useful research for people who have CSF / ME. This will be achieved through a three-part process towards prioritizing specific research projects.
The first task of the operation panel is to assess initiatives to research needs or research question that has entered the deadline 3rd May 2016 (step 1). Based on the operation panel priorities of the proposals, we will formulate a specific announcement that scientists are invited to respond.
Researchers will initially submit a simplified application with a brief project description (step 2). User Panel assesses and ranks the applications on the basis of how they answer the needs and expected benefits as this is requested in the announcement. Various researchers who submitted a simplified application will then be invited to submit a full application (step 3). These applications will be treated in a similar manner as ordinary applications for health programs. Planned deadline for submitting a simplified application is September 7, 2016 and for the full application on November 23, 2016.
Research will publish a short report with general discussion of research proposals that have been received. Announcement Text and invitation to a simplified application (step 2) is scheduled to be published on the Research Council's website in June. Please note that none of the operation panel members may submit or be involved in an application for a research project. Name of the panel members will be announced in early May.
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Published:
04/10/2016
Last updated:
04/10/2016