Skip to main content

Alert COVID-19

Please find service updates and current visiting rules in our COVID-19 section.

This site is best viewed with a modern browser. You appear to be using an old version of Internet Explorer.

The process

The direction of research is often set by researchers or by the drug industry. We want to enable patients, carers, and the health and social care professionals who are involved with rare inherited anaemias to have their say, so that future research in this area is aligned with what matters to everyone whose life is affected or who work with the people whose lives are affected.

The James Lind Alliance (JLA) process brings patient, carer, and clinician groups together on an equal footing in a Priority Setting Partnership (PSP) to:

  • identify unanswered questions about a health problem which is important to them;
  • work as partners to prioritise the questions;
  • produce a 'top ten' list of jointly agreed priorities as research questions to be presented to researchers and funders.

Our Project Protocol document sets out the aims, objectives and commitments of the PSP for Rare Inherited Anaemias. It sets out how the project meets the principles established by the JLA. Our JLA advisor has played a central role in helping the Steering Group establish this protocol and works to ensure that accountability and transparency are maintained throughout the project.

Stage 1 - Establishing the PSP

  • Steering Group established
  • Protocol agreed
  • Partners recruited
  • Project management and arrangements confirmed
  • Initial stakeholder meeting

Stage 2 - Survey

  • Initial survey open
  • Partner organisations disseminate survey to members
  • Survey advertised

Stage 3 - Data management

  • Data management protocol agreed
  • Out of scope questions removed and collated
  • Duplicates combined
  • Questions grouped by theme and arranged in a research question format
  • Existing research checked
  • Results and process reviewed by Steering Group

Stage 4 - Interim prioritisation

  • Interim survey designed and open
  • Prioritisation analysis conducted
  • Shortlist of unanswered questions produced for final prioritisation

Stage 5 - Final prioritisation

  • Workshop attended by partners and partner organisations
  • Top ten unanswered research questions agreed by consensus