This Week in Sickle cell news October 26th to the 1st of November

By Sean Marshall
This week it was announced that the first national sickle cell anemia survey has closed. The survey was nation wide and had over 600 responses. This included 200 different responses per unique survey. The idea is to not gave them all identical because it can often cause issues with statistical analysis.
The survey was designed by the Pricker institute to improve “the quality of health and social care for all, the development and implementation,” the ideas the questions were based off of commissioned work by the National Institute for Health Research Collaboration for leadership in Applied Health Research and Care Northwest London. The short form is NIHR CLAHRC NWL it's a lot to take in and to be honest the length of the name can be overwhelming but the important thing to remember is that they are partnered with Sickle Cell Society and are doing great work.
The survey asked patients about their experiences focusing on “aspects of care that are important to them, including access to care services, information and support for their condition, and their views on care across inpatient, outpatient and emergency settings. Survey versions suitable for both pediatric and adult patients, and parents/ carers of young SCD patients, were available.”
It was explained that “final data is currently being analyzed by the Picker Institute and the key findings will be shared as soon as they are available.” So we'll be looking forward to the results and keep everyone posted in the mean time.
original article can be found here: http://www.blacknet.co.uk/first-national-survey-of-people-living-with-sickle-cell-disease-closes-for-analysis/
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