Patients’ Research Agenda & aHUS Global Polls

 

 

Global aHUS Patients’ Research Agenda

 

The aHUS Alliance, an umbrella group of aHUS advocates and patient groups in over 30 nations, launched its aHUS Global Patients’ Research Agenda on Rare Disease Day 2019. An international project developed over 4 years, the aHUS Global Patients’ Research Agenda lists 15 central questions grouped into 5 main categories:  Causes and Precautions, Diagnosis, Treatment, Impact: Clinical/Psychological, and Impact: Socio-Economic.

The aHUS Global Patients’ Research Agenda was crafted using input from an alliance affiliates group in 2015, survey data from the 2016 aHUS Global Poll, and international entries from aHUS patients and caregivers for the aHUS Alliance 2017 Rare Disease Day video project.

The importance of the aHUS Global Patients’ Research Agenda was described in an aHUS Alliance video and it is available in 3 languages:  EN, ES, and FR.

 

In ENGLISH:  aHUS Global Patients’ Research Agenda, PDF 

 

 

ES:  Spanish Language Version

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Agenda Investigación de Pacientes Globales de SHUa

Descargue la Agenda pdf en español

ES:  aHUS Patients’ Global Research Agenda.pdf

(Translation courtesy of Merche Forte, Spain)

 

 

 

 

FR:  French Language Version

Programme de Recherche Mondial pour les Patients SHUa

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FR  aHUS Global Patients’ Research Agenda pdf

(Translation courtesy of Nicolas Mullier, France)

 

 

 

 

aHUS Alliance:  aHUS Global Polls

 

*2020  aHUS Global Poll – Current initiatives Underway*

 

 

 

2016 aHUS Global Poll

Background

The aHUS Alliance launched a worldwide poll of aHUS patients and caregivers of pediatric patients to mark Rare Disease Day 2016 (29 February).  Poll questions included common themes familiar to patients with rare diseases and echoing broadly on Rare Disease Day: 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. A similar effort was conducted in partnership with RareConnect in 2014, with 214 respondents from 17 nations.

 

With 233 respondents from 23 nations, the 2016 aHUS global poll remained open until 15 April to allow patients to access poll questions in 6 different languages: English, Spanish, French, Italian, Russian, and Japanese. FMI: 2016 aHUS Global Poll Insights

 

Polls & Data

Poll QUESTIONS from the 2016 aHUS Global Poll

 

Results: GRAPHS and Info for Questions 1-15

Results: GRAPHS and Info for Questions 16-30

Results: GRAPHS and Info for Questions 31-45

 

Other Assets

2016 aHUS Poll Results (Webinar) – Hosted by RareConnect, with commentary by Dr. Christoph Licht

aHUS Alliance “Patient Voice, 2016 Poll – Outreach & Webinar Registration

Mid-point Poll Results – RareConnect,  Article

European aHUS Patients’ Voice – 2016 poll, EU Results (pdf)

Research & Registries – 2016 poll, on Patient Registry Insights (pdf)