A worldwide survey of aHUS adult patients and pediatric caregivers was launched on Rare Disease Day (29 Feb 2016) and continued through 15 April 2016 to accommodate a rollout of survey translations in 6 languages. The survey premise was that patient and caregiver poll responses can provide better understanding and insights into aHUS diagnosis, treatment, and medical care from the patient perspective. A similar effort was conducted in partnership with RareConnect in 2014, with 214 respondents from 17 nations while the 2016 global poll was a multi-national volunteer effort that saw 233 replies from respondents from 23 countries. (Link below to 2014 poll results) Our special thanks to the patients and caregivers who participated with the 2016 aHUS global poll. We also appreciate the many physicians, aHUS researchers, and organizations that supported this survey through patient connections and across social media.
The 2016 global survey questions were suggested from various sources, to include topics from the June 2015 aHUS Alliance multi-national meeting of patient organizations in London, online discussions across aHUS social media outlets, and interactions with aHUS researchers in conjunction with input from various interfaces within the aHUS arena. Additionally, some poll items were designed to help patient groups better understand the needs of their members and to explore the differences in care, diagnosis and treatment access around the world.
All nations within the aHUS Alliance were invited to participate with the 2016 survey subcommittee, and were encouraged to be involved with multiple aspects of the 2016 aHUS global poll. The aHUS Alliance, an umbrella group of 15 nations with aHUS patient groups, includes among their goals: supporting aHUS patient groups around the world, assisting national and global initiatives regarding information about medical and patient issues, providing and promoting the patient viewpoint, and improving interactions among all stakeholders involved with aHUS treatment and research.
The survey was designed in part to help patient groups better understand the needs of their members and to explore the differences in care, diagnosis and treatment access around the world. Information from the 2016 aHUS global poll also can provide researchers,clinical trial investigators and industry a better perspective of how to reach physicians and their patients. Data from the 2016 aHUS global poll may provide aHUS patient organizations data to present to their government’s policy makers, healthcare industry, and Health Ministers concerning options in their nations for continuation or expansion of patient care and treatment options.
The 2016 aHUS global survey should provide an updated view to the 2014 RareConnect poll which centered on how patients and their families move through the process of obtaining a diagnosis, while also providing survey information about various impacts or consequences of the disease on their lives. Additionally, new survey information might also offer some insight into how patients might more fully engage with, or become informed about opportunities and advancements in aHUS research, studies, clinical trials, and aHUS registry efforts. We are pleased to announce that the RareConnect team will as in 2014 once again partner with the aHUS Alliance to host a webinar on interpretation of the 2016 aHUS global poll results, with analysis and commentary by Dr. Christoph Licht – aHUS researcher and clinician at Toronto’s Sick Kids Hospital. Following is a brief list to include additional information, and where to follow 2016 aHUS global poll results and updates.
A preview of Select Survey Items, and Links FMI:
Reply Rates. 233 responses were received from aHUS adult patients or pediatric caregivers in 23 different countries. (See chart below)
Age. Survey responses were almost equally divided by patient age with slightly over half of the data gathered pertaining to adult patients as a group, versus just under 50% of the survey data related to aHUS pediatric patients.
Regarding age of first aHUS activity in the patient, the most common initial onset age range was reported as 21 to 35 years old, while the least common was patients first experiencing aHUS activity over the age of 65 years old.
Gender. About two-third of the aHUS patients represented in our 2016 aHUS global poll were female patients (of any age) while only about one-third were male patients.
Time of Year, for Initial Onset. We divided the calendar year into quarters: Jan-March, April-June, July-Sept, and Oct-Dec. There were approximately the same number of patients presenting with an initial onset of aHUS activity in three of the four quarters. Respondents indicated a distinctly higher rate for the patient’s initial aHUS episode during the months of October through December.
Country # Responses by Country
New Zealand 3
South Africa 1
For More INFO:
2016 aHUS POLL – Update ONE: Mid-Point Survey Results (RareConnect blog hyperlink), or see
Info about the 2016 aHUS POLL - LAUNCH: Launch of 2016 aHUS Global Survey, or see
Click this link: 2014 aHUS global poll, in partnership with RareConnect: Results, Video- Webinar, and Commentary or see http://ow.ly/4n9k00
For Questions about the 2016 aHUS poll, email firstname.lastname@example.org
Survey results will be posted on www.ahusallianceaction.org, follow updates on
(From a blog posted earlier to RareConnect )