Do I have SLE? Do I have Hughes' Syndrome?
Diagnosis can only be made by a medical doctor. I real life, many of us suffer for years without a diagnosis.
The James Lind Alliance Priority Setting Partnership (PSP) for Medically Not Yet Explained Symptoms (MNYES) is currently running a survey to establish research priorities according to patients, carers and clinicians dealing with MNYES.
The initial question-gathering survey for this PSP opened in June 2020 and you are most welcome to fill in the survey at york.qualtrics.com/jfe/form...
Who are we?
We are a group of patients, carers, clinicians, and researchers who want to improve the care and quality of life of patients with MNYES. The James Lind Alliance aims to help patients and health professionals find unanswered research questions.
This work is a collaboration between the James Lind Alliance, The University of York, The Clinical Center of Excellence for Body, Mind and Health (Tilburg), and Tilburg University. Prof Christina van der Feltz-Cornelis from the Department of Health Sciences at the University of York is leading the project. Dr. Jonathan Gower is JLA chair.
Why we would like your help?
We want to give
patients
their carers/relatives and
healthcare professionals involved in the diagnosis and treatment of MNYES
a voice in deciding the questions focussed on MNYES that should be answered by research so that patients can benefit in the future. The survey will take approximately 10 minutes to complete, depending on the length of your answers. If you are unable to complete the survey in one sitting, you will be able to come back to complete it up to one week after starting it.
What will we do with your survey responses?
If you choose to take part in the survey, we will collate the answers you provided with other survey respondents. Once we have collated all the responses, we will ask patients, carers/relatives, and healthcare professionals to prioritise which of these they think are the most important questions for future research . This ranking will allow research funders to know which questions need to be answered by future research studies.
By participating in this survey you give us, and partner organisations, permission to publish your answers for the Priority Setting Partnership. You cannot be identified from the information you provide in the survey.
How many in your family have APS and/or other autoimmune issues?
Neurologists and other health care professionals
Hughes Syndrome Study
DLA Tribunal
