Friday, 1 September 2017

James Lind Alliance: priority for research into miscarriage

Our charity was delighted to be invited to be a key stakeholder in the priority setting partnership organised by the James Lind Alliance.

Traditionally, the research agenda has been set by the pharmaceutical industry and researchers themselves, but little consideration has been given to the priorities of women and their partners who have experienced miscarriage. The James Lind Alliance (JLA) is a non-profit initiative with the aim of making healthcare research funders aware of these issues that matter most to patients.

The process involved surveying 1093 participants (932 women who have experienced miscarriage, 8 partners, 17 family members, friends or colleagues, 104 healthcare professionals and 8 charitable organisations) and identifying key stakeholder groups.

From the survey questions, the 25 highest ranked were prioritised to a list of 10 at a final face-to-face workshop in which our charity participated. 

In summary, the top 10 priorities were ranked as follows: 
  • research into preventative treatment
  • emotional aspects in general
  • investigation and relevance of pre-existing medical conditions
  • emotional support as a treatment
  • importance of lifestyle factors
  • importance of genetic and chromosomal causes
  • preconception tests
  • investigation after different numbers of miscarriage
  • male causal factors
It was encouraging to note that antiphospholipid syndrome is now established as the most important treatable cause of recurrent miscarriage, and we hope these results will help direct the focus of future miscarriage research so that women with obstetric APS have a more positive outlook.

To read the full paper, please click here.

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