Atypical HUS Diagnosis:  2021 Survey of Patient Experiences

aHUS Global Action – Patient & Caregiver Insights & Pathways

“The patient’s journey to aHUS diagnosis is as individual as the patients themselves.”

The aHUS alliance Global Action conducted a survey to provide an the opportunity for adult patients and aHUS pediatric caregivers around the world to share their own experience and perception of the aHUS diagnosis process.
Open from 25 November 2020 through 19 January 2021, the survey goals were to capture diagnosis process timelines, aHUS symptom severity and its impact on health. The 42 question poll, with 227 participants across all 7 continents, provided the opportunity to gain more understanding of the atypical HUS diagnosis pathway and what patients thought or felt about their experiences.  Greater awareness of this very rare disease can foster more rapid and accurate diagnosis of atypical HUS, which may lead to research advancements and promote better patient outcomes. Collectively that evidence of patient perceptions can be used to inform, educate and help shape better diagnosis experiences for those yet to suffer an aHUS onset.

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Connecting the Dots

Info & 2021 aHUS Survey RESULTS

1st Report  (issued 24 Sept 2021) Article w/ Background   REPORT 1 (pdf):  Patients’ experience and perception of the aHUS diagnostic process  

2nd Report (issued 18 Dec 2021) – Article w/ Background   REPORT 2 (pdf):  From Patients’ 1st Symptoms, with Escalation to Specialist Care 

3rd Report  (issued 28 Feb 2022)  Article w/ Background  REPORT 3 (pdf) Patients’ experience of Specialist Care: the Diagnosis Decisions

4th Report  (issued 10 June 2022)  Article w/ Background  REPORT 4 (pdf) Impact of process event and patient
demographic variables on process outcomes

Poll QUESTIONS:  Click HERE to View the 2021 aHUS Diagnostic Survey tool 

Our PREVIOUS aHUS Alliance Global Action SURVEYS

2016 aHUS Global Poll – OVERVIEW: Methodology & Insights
2016 aHUS Global Poll: Survey Questions
2016 aHUS Global Poll – RESULTS
GRAPHS and Info for Questions 1-15
GRAPHS and Info for Questions 16-30
GRAPHS and Info for Questions 31-45
2016 aHUS Global Poll: White Papers
Providing an interpretation of 2016 poll data in the context of aHUS research, on two key global issues:
 * Access to aHUS Treatment   
 * aHUS and Dialysis Insights 

aHUS Alliance Global Poll 2014 – in partnership with RareConnect 
Open from 17 February to 7 March 2014, the survey provided information and insights from 214 respondents, replying in 6 different languages across 17 nations.
Living with Atypical Hemolytic Uremic Syndrome Poll Results (slides, from

aHUS Gobal Poll 2014 – A Commentary on the Data

2014 aHUS Poll – InfoGraphic