The Atypical HUS Foundation

Mid-Point Results - 2016 aHUS Global Survey

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:

 

  • 113 responses:  adults 53%, on behalf of pediatric patients 27%

 

  • Country response rates: 

 

Country Name:                                    Number of survey responses:

USA (United States of American)                    53

UK (United Kingdom)                                      22

Canada                                                          19

Australia                                                          4

Germany                                                          2

India                                                                2                                            

Netherlands                                                      2

New Zealand                                                    2

Belgium                                                           1 

Brazil                                                              1 

Bulgaria                                                           1 

Denmark                                                          1 

Pakistan                                                          1 

Turkey                                                             1 

 

  • Genetic Screening (select data):

 

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/

 

LINKS: 

 

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 info@ahusallianceaction.org

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NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.

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Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
• • • • • • • • • • • •
  
It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

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