aHUS Voice in 2016

2016 aHUS Global Poll – Results

aHUS Patient Global Voice

In a multi-national collaboration of aHUS patient organizations around the world, the 2016 aHUS global poll of patients and pediatric caregivers was launched on Rare Disease Day. Open from 29 February through 15 April 2016, 233 participants from 23 nations provided information and insights by answering the 46 poll questions which were available in 6 languages: ENG, ES, FR, IT, RUS, and Japanese.

 Gathering information on the aHUS patient experience, this 2016 poll empowered the aHUS community worldwide to express concerns and to give insights into the challenges of aHUS. These patient and caregiver poll responses provide another viewpoint regarding aHUS diagnosis, treatment, and medical care. Data from this 2016 survey additionally offers 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.

In collaboration with the aHUS Alliance, RareConnect will host a 21 June 2016 webinar focused on analysis and interpretation of data collected during the recent aHUS global poll which was open from Rare Disease Day (29 Feb) until 15 April 2016. The webinar presenter will be Canadian aHUS expert researcher and clinician Dr. Christoph Licht of Toronto’s Sick Children’s Hospital. Viewers worldwide can participate in this event at 11am (EDT) in Toronto and New York, 8am in Seattle USA (PDT), 4pm in London (BST), and 8:30pm in Hyderabad (IST).

Register for the 21 June 2016 RareConnect aHUS Webinar: Results & Analysis, the 2016 aHUS Global POLL at https://t.co/XHI6qd5pKj Check your webinar time here: http://www.worldtimebuddy.com/.

Our special thanks to the patients and caregivers who participated with the 2016 aHUS global poll. Many physicians, aHUS researchers, and organizations worldwide supported this survey through patient connections and across social media, and the aHUS Alliance** of patient organizations extends its appreciation for the collaborative advocacy efforts of those individuals, groups, and nations.

Throughout the coming months, and for global aHUS Awareness Day on 24 September, aHUS facts and insights from this 2016 aHUS Patient Global Voice will be featured in outreach and awareness efforts. Additional information and resources are offered below. Follow upcoming releases of poll results commentary and news on here, and on Twitter at @aHUSallianceAct and @aHUS24Sept.

Info & Resources

2016 aHUS Patient Global Voice – Fast Facts

  • 233 aHUS patients and pediatric caregivers from 23 countries responded to the 2016 aHUS global poll’s 46 survey questions, offered in 6 languages.
  • Results from the 2016 aHUS global poll reflect a fairly even split of response rates from adult aHUS patients (N=120) versus caregivers of pediatric aHUS patients (N=113).
  •  National response rates in the 2016 aHUS Patient Global Voice (N=233) varied greatly, with these countries as top poll participants: USA (N=100), UK (N=42) and Canada (N=25).
  •  About two-thirds (66%) of the aHUS patients represented in our 2016 aHUS global poll were female patients (of any age) while only about one-third (34%) were male patients.
  •  The most common ‘initial onset’ age range for respondents’ first aHUS activity was 21 to 35 years old (about 29%), with just under 2% of patients reporting their initial episodes of aHUS activity occurred when over 65 years old.
  •  According to 2016 aHUS poll results, access to eculizumab for treatment of all aHUS patients worldwide plummets from 77% to only 37% of poll participants when USA and European responses are excluded from the global response data.
  •  When asked where they seek information about aHUS, the highest 2016 aHUS Patient Global Voice’s response rate (37%) was to find aHUS information from an aHUS patient organization site.

2016 aHUS Poll survey questions can be viewed at http://www.ahusallianceaction.org/survey/

Join us for the 21 June 2016 RareConnect Webinar regarding aHUS Patient Global Voice results, with registration now open at https://t.co/XHI6qd5pKj. (Results and the archived webinar will be posted in the Information Centre at www.ahusallianceact.org after 21 June 2016)

For questions regarding the 2016 aHUS Global Poll, please contact info@ahusallianceaction.org

2014 aHUS Global Poll:  Results, Video, and Commentary – in partnership with RareConnect

 http://ow.ly/4n9k00

 

**About the aHUS Alliance: 

The aHUS Alliance, an umbrella group of 15 nations with aHUS patient groups, includes among their activities: 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.