Request for NOD-DERS: Could your data be part of the NOD (National Outcomes Database of UK ME/CFS patients set up by Esther Crawley)? How would you know?
If you know you contributed to the NOD database when you attended a UK ME/CFS service, or if you think you may have done, any information about what you were asked to do and/or what you were told about the NOD, either by the service staff in person at the clinics or in letters to you at the time, would be most useful to a current line of enquiry. (Either post here or contact me via back channel message.)
NB Any memories of this, no matter how apparently trivial or incomplete, may be useful.
How would you know if you were part of the NOD?
NB You may not have been told that your data was being used in this way
· You would have been asked to fill in numerous questionnaires either sent in the post before your first appointment to take with you to that appointment, or given to you to complete at the first appointment. You may have also been asked to fill in these questionnaires (plus possibly additional ones) again a year later. These may have been sent out in the post to you or given out at the clinic.
· The questionnaires would probably have included a Hospital Anxiety and Depression Score (HADS), a ‘Self-Efficacy Scale’, a ‘Visual Analogue Pain Rating Scale’, a ‘Chalder Fatigue Questionnaire’ and a ‘MOS(SF-36)’. Forms at the year 1 mark would likely have included those already listed, but also may have included an ‘Occupation’ questionnaire about paid or voluntary employment, and a ‘Clinical Global Impressions Scale’ about how much better or worse you felt after treatment. The forms would have been A4 size on white paper with a patient ID number/code at the top which included your initials and part of your postcode (although this may not have been filled in on every form).
· You may have been attending one of these services:
see list here - supplementary material
or here: http://bmjopen.bmj.com/content/bmjo...n-2015-008830.DC1/bmjopen-2015-008830supp.pdf (Apols, I can't embed this link)
(taken from http://bmjopen.bmj.com/content/5/10/e008830.info )
although this list may not be comprehensive
If you know you contributed to the NOD database when you attended a UK ME/CFS service, or if you think you may have done, any information about what you were asked to do and/or what you were told about the NOD, either by the service staff in person at the clinics or in letters to you at the time, would be most useful to a current line of enquiry. (Either post here or contact me via back channel message.)
NB Any memories of this, no matter how apparently trivial or incomplete, may be useful.
How would you know if you were part of the NOD?
NB You may not have been told that your data was being used in this way
· You would have been asked to fill in numerous questionnaires either sent in the post before your first appointment to take with you to that appointment, or given to you to complete at the first appointment. You may have also been asked to fill in these questionnaires (plus possibly additional ones) again a year later. These may have been sent out in the post to you or given out at the clinic.
· The questionnaires would probably have included a Hospital Anxiety and Depression Score (HADS), a ‘Self-Efficacy Scale’, a ‘Visual Analogue Pain Rating Scale’, a ‘Chalder Fatigue Questionnaire’ and a ‘MOS(SF-36)’. Forms at the year 1 mark would likely have included those already listed, but also may have included an ‘Occupation’ questionnaire about paid or voluntary employment, and a ‘Clinical Global Impressions Scale’ about how much better or worse you felt after treatment. The forms would have been A4 size on white paper with a patient ID number/code at the top which included your initials and part of your postcode (although this may not have been filled in on every form).
· You may have been attending one of these services:
see list here - supplementary material
or here: http://bmjopen.bmj.com/content/bmjo...n-2015-008830.DC1/bmjopen-2015-008830supp.pdf (Apols, I can't embed this link)
(taken from http://bmjopen.bmj.com/content/5/10/e008830.info )
although this list may not be comprehensive
- Children's questionnaires would have varied somewhat from those listed above, but data collections would have been made at or before assessment and at one year and possibly also at other intervals.