There were several questions in the Rare Disease Day video about how aHUS patients feel after recovery from aHUS ( click here and here to read them) and how research might help understand what it is like over time.
Well some aHUS patients i.e. those who are enrolled in the aHUS Registry , are going to have the opportunity to contribute to a better understanding of just how tiring the disease can be.
Every six months these aHUS patients have been completing questionnaires at their aHUS clinics about how they have been feeling individually.
Prof Larry Greenbaum of the Emory University School of Medicine and Children’s Healthcare of Atlanta, and the lead investigator of the aHUS Registry Scientific Advisory Board’s task group on FACIT*-Fatigue has told the alliance “We’d like to get input from the aHUS patient community regarding the planned Facit fatigue analysis of the registry.
As background, patients are asked to complete a survey that measures fatigue at the baseline visit and all subsequent visits. The current goals of the study are to compare fatigue in aHUS patient with healthy people. We will see if it is different in pediatric and adult patients. We will also look at the impact of current health status (dialysis patients, transplant patient, recent hospitalization, anemia, low platelets, elevated LDH). We are going to do an analysis and see if fatigue gets better the further a patient is from their latest TMA. We will also compare patients on and off eculizumab.”
It is important that these questionnaires are completed continually because it is the trends that reveal so much and the numbers enbrolled in the aHUS Registry are approaching 1600 patients so the results will represent a sizeable element of the aHUS patient community.
*Functional Assessment of Chronic Illness Therapy Measurement System is a collection of health-related quality of life (HRQOL) questionnaires, one of which is fatigue , and which are targeted to the management of chronic illness
3 July 2017
