Last year, the International Rare Diseases Research Consortium (IRDiRC) has established a task force with the objective of promoting Patient-Centered Outcome Measures in the area of rare diseases. What it means is this:
The conversation about research into rare conditions should not be left to clinicians alone, but include patients and their perspective.
The task force will conduct a workshop to discuss concrete actions to improve the search for good ways to assist patients with rare diseases, whether it’s in clinical trials, the development of new treatments and therapies, or other research efforts that make life easier for people living with rare and orphan diseases. They’re intending to publish a follow-up paper, and obviously, we’re all very interested in it. At Patient Worthy, we’ll definitely keep and eye out for this, to see if anything useful comes of it.
In order to ensure the success of the initiative, we encourage patients to reach out to the task force’s steering committee, and check if there’s a way to contribute constructive input to this initiative. And we encourage the leaders of the project to listen and put the patient voice first in this effort.
