Guidelines on the Diagnosis and Management of Multiple Myeloma
Appendix. Proposed Minimum Data Set For Myeloma
1. Registration Data
Patient Identification
1. Date of Birth
2. Postcode
3. Sex: male; female
4. NHS number (if known)
5. GP name
Referral Information
6. Origin of referral: GP/ hospital specialist/other
7. Date of referral
8. Date first seen
9. Date of diagnosis
10. Diagnosis: MGUS/multiple myeloma/plasmacytoma
Diagnostic Data
11. Paraprotein type: IgG/IgA/light chain/IgD/non secretory/other
(define)
12. Pre-treatment quantification
13. Bone marrow: % plasmacytosis
14. Bone marrow cytogenetics/FISH: normal; abnormal; not done
15. Skeletal survey: normal/osteoporosis/lytic lesions/fractures
Prognostic Data
16. World Health Organisation performance status
17. Serum/plasma creatinine after hydration
18. Haemoglobin after hydration
19. β2-microglobulin
20. Cytogenetic results - if available
Treatment Plan
21. Treatment intent
- observation only
- chemotherapy #
- radiotherapy
- surgery, e.g. orthopaedic procedure
- palliative/supportive treatment only
23. type of trial if entered (MRC/local/UK multicentre/international multicentre)
24. date started therapy
# covers any form of primary chemotherapy e.g. melphalan, VAD etc
2. Follow-up Data
Patient Identification
1. Date of Birth
2. Postcode
3. Sex: male; female
4. NHS number (if known)
5. GP name
Transplantation/Stem cell procedure
6. "Rainy day" harvest: yes/no; date collected
7. Autograft: yes/no/ date
8. Allograft: yes/no/ date
Outcome at 12 months and annual follow up
9. Current status: alive/dead/unknown
10. Current disease status (refractory/response/progression)
11. Further treatment since initial treatment programme (yes/no)
12. If dead, date of death
13. Cause of death