Oxford University Hospitals NHS Foundation Trust

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Survey

Who can join in?

We will address research needs for the diagnosis, treatment, management and care delivery of people of all ages with rare inherited anaemias. 

By Rare Inherited Anaemias, we mean:

  • Diamond-Blackfan Anaemia
  • Congenital Dyserythropoietic Anaemia
  • Congenital Sideroblastic Anaemia
  • Red Cell Membrane Disorders
  • Red Cell Enzyme Disorders
  • Transfusion-Dependent Unexplained Inherited Anaemias

This survey can be answered by anyone who

  • has a rare inherited anaemia listed above;
  • is a carer or family member of someone with it;
  • is a health, or social care, professional caring for people with rare inherited anaemias; or
  • is part of an organisation representing and/ or supporting people with rare inherited anaemias.

Who does this survey not relate to?

We have NOT included sickle cell disease and thalassaemia because, while in some parts of the country these are very rare, in others they are more common and there is much more research being done into these than the conditions listed above.  We have also NOT included Fanconi’s anaemia or aplastic anaemia as these are bone marrow failure syndromes and we are focusing on conditions where anaemia is the predominant problem.

The survey questions

These are the questions we are asking you to think about:

  • What questions do you have about the diagnosis of rare inherited anaemias (e.g. how the diagnosis is made, what tests are available, how the diagnosis is explained by the doctor or anything else related to the initial diagnosis)?
  • What questions do you have about the treatment of rare inherited anaemias (e.g. to do with transfusions, chelation, medication; examinations such as ferriscans, biopsies & other tests - all things provided by medical professionals to treat your condition)?
  • What questions do you have about the management of rare inherited anaemias? (e.g. things you do to help manage your treatment between visits to health professionals which might include managing your general and psychological health).
  • What questions do you have about how care is organised and delivered for rare inherited anaemias (e.g. how different specialists coordinate care and communicate together)?
  • What questions do you think should be researched? Contribute your questions using the following link:

 

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