The following blog was originally posted on the RareConnect global aHUS webpage:
Update: MARCH 30, 2016
NEW - Survey now in 6 languages, with survey end date extended until April 15, 2016 !
There are new 2016 aHUS global survey translations in Japanese and Russian were added on March 30th, to encourage participation by Japanese and Russian patients,
All 6 languages are available by selecting a specific language button (ES- Spanish, FR- French, IT-Italian, ENG-English, RUS- Russian, and Japanese) on the global survey platform at http://www.ahusallianceaction.org/survey/
The 2016 aHUS global survey of patients and caregivers launched on Rare Disease Day, 29 February and continues to be open to respondents in all nations through the end of March. A similar effort was conducted in partnership with RareConnect in 2014. That poll resulted in obtaining information from 214 respondents within 17 nations, and who responded to outreach in 6 different languages.
Similar to the effort 2 years ago, the 2016 global poll includes questions on common themes familiar to patients with rare diseases. Not surprisingly, these survey topics were seen widely on Rare Disease Day as well: barriers to diagnosis, access to treatment, availability of genetic testing, need for increased research efforts, participation in registries and clinical trials, and better/more information about their rare disease.
All nations within the aHUS Alliance were invited to participate on 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.
Here some of the 2016 aHUS global survey results at mid-month, 16 March 2016. (See below for earlier stats and for FMI regarding the poll). The poll is currently being translated into French, Italian, and Spanish and will be available soon. We are pleased to announce a collaborative effort with RareConnect to host a post-survey analysis commentary, with details to be announced as soon as plans are finalized.
As of 16 March 2016, here are select statistics from the 2016 aHUS global poll:
Country Name: Number of survey responses:
USA (United States of American) 53
UK (United Kingdom) 22
New Zealand 2
30% of respondents (N=29) indicated CFH (Factor H)
26% of respondents (N=25) indicated genetic screen results were inconclusive/genetic cause not known
13% of respondents (N=12) indicated genetic test reults are still pending at present
7% of respondents (N=7) indicated CFI (Factor I)
We encourage aHUS patients and caregivers in all nations to participate in the 2016 aHUS global survey at http://www.ahusallianceaction.org/survey/.
2016 aHUS Global Survey of Patients and Caregivers: http://www.ahusallianceaction.org/survey/
Follow the survey updates on Twitter at: @aHUSallianceAct
Prior blog about the 2016 global Survey: http://atypicalhus.ning.com/profiles/blogs/ahus-global-survey-for-p...
2014 aHUS global poll: Results, Video, and Commentary: https://www.rareconnect.org/en/community/atypical-hemolytic-uremic-...
For questions regarding the survey, please contact firstname.lastname@example.org