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Patient reported outcome measures in ATTR amyloidosis - PROMs in ATTR amyloidosis

- 8/6/20 - 1 form, 8 itemgroups, 76 items, 1 language
Itemgroups: Demographic Factors, Comorbidities, Patient reported outcomes: ATTR Diagnosis, First organ system involved, Patient reported outcomes: Quality of life, Patient reported outcomes: Disability, Patient reported Outcomes: ATTR Management, ATTR Therapy
Patient reported outcome measures (PROMS) in patients with ATTR amyloidosis Dr. med. Fabian Johannes Bolte Klinik für Gastroenterologie und Hepatologie Universitätsklinikum Münster Conditions: ATTR Amyloidosis This form is used for patient reported outcome measures (PROMS) in patients with ATTR amyloidosis to understand patients challenges and needs. Use of the following Scores for this standard set: (1) Patient Reported Outcomes Measurement Information System Short Form version 1.1 Global Health (PROMIS-10) (2) World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0)- 12-item Instrument

18pp EBMT Amyloidosis

- 9/20/21 - 1 form, 21 itemgroups, 284 items, 1 language
Itemgroups: GENERAL INFORMATION TEAM, GENERAL INFORMATION PATIENT, DISEASE, AL AMYLOIDOSIS INITIAL DIAGNOSIS, ORGAN INVOLVEMENT AT DIAGNOSIS, PRE-HSCT TREATMENT, HSCT, STATUS OF DISEASE AT COLLECTION (AUTOGRAFTS ONLY), STATUS OF DISEASE AT START OF CONDITIONING FOR BMT, STATUS OF DISEASE AT 100 DAYS AFTER HSCT, ORGAN-SPECIFIC RESPONSES AT 100 DAYS AFTER HSCT, FORMS TO BE FILLED IN, FOLLOW UP AL AMYLOIDOSIS, PATIENT LAST SEEN, GRAFT VERSUS HOST DISEASE (GvHD) SINCE LAST REPORT, OTHER COMPLICATIONS SINCE LAST REPORT, GRAFT ASSESSMENT AND HAEMOPOIETIC CHIMAERISM, ADDITIONAL THERAPIES SINCE LAST FOLLOW UP, FIRST EVIDENCE OF DISEASE WORSENING SINCE LAST HSCT, LAST DISEASE AND PATIENT STATUS, ADDITIONAL NOTES IF APPLICABLE
DOCUMENTED PATHOGENS (Use this table for guidance on the pathogens of interest) Bacteria: S. pneumoniae, Other gram positive (i.e.: other streptococci, staphylococci, listeria …),Haemophilus influenzae, Other gram negative (i.e.: E. coli klebsiella, proteus, serratia, pseudomonas …), Legionella sp, Mycobacteria sp, Other Fungi: Candida sp, Aspergillus sp, Pneumocystis carinii, Other Parasites: Toxoplasma gondii, Other Viruses: HSV, VZV, EBV, CMV, HHV-6, RSV. Other respiratory virus (influenza, parainfluenza, rhinovirus), Adenovirus, HBV, HCV, HIV,Papovavirus, Parvovirus, Other

EBMT Amyloidosis

- 9/20/21 - 1 form, 21 itemgroups, 284 items, 1 language
Itemgroups: GENERAL INFORMATION TEAM, GENERAL INFORMATION PATIENT, DISEASE, AL AMYLOIDOSIS INITIAL DIAGNOSIS, ORGAN INVOLVEMENT AT DIAGNOSIS, PRE-HSCT TREATMENT, HSCT, STATUS OF DISEASE AT COLLECTION (AUTOGRAFTS ONLY), STATUS OF DISEASE AT START OF CONDITIONING FOR BMT, STATUS OF DISEASE AT 100 DAYS AFTER HSCT, ORGAN-SPECIFIC RESPONSES AT 100 DAYS AFTER HSCT, FORMS TO BE FILLED IN, FOLLOW UP AL AMYLOIDOSIS, PATIENT LAST SEEN, GRAFT VERSUS HOST DISEASE (GvHD) SINCE LAST REPORT, OTHER COMPLICATIONS SINCE LAST REPORT, GRAFT ASSESSMENT AND HAEMOPOIETIC CHIMAERISM, ADDITIONAL THERAPIES SINCE LAST FOLLOW UP, FIRST EVIDENCE OF DISEASE WORSENING SINCE LAST HSCT, LAST DISEASE AND PATIENT STATUS, ADDITIONAL NOTES IF APPLICABLE
ODM form derived from Amyloidosis EBMT refer to: http://www.ebmt.org/Contents/Data-Management/Registrystructure/MED-ABdatacollectionforms/Pages/MED-AB-data-collection-forms.aspx

Eligibility NCT00925002 ATTR-PN - Eligibility

- 9/17/21 - 1 form, 2 itemgroups, 10 items, 2 languages
Itemgroups: Inclusion Criteria, Exclusion Criteria
ODM derived from http://clinicaltrials.gov/show/NCT00925002

Patient reported outcome measures in ATTR amyloidosis (short version) - PROMs ATTR short

- 8/6/20 - 1 form, 3 itemgroups, 31 items, 1 language
Itemgroups: Demographic Factors, Patient reported outcomes: Quality of life, Patient reported outcomes: Disability
Patient reported outcome measures (PROMS) in patients with ATTR amyloidosis (short version) Dr. med. Fabian Johannes Bolte Klinik für Gastroenterologie und Hepatologie Universitätsklinikum Münster Conditions: ATTR Amyloidosis This form is used for patient reported outcome measures (PROMS) in patients with ATTR amyloidosis to understand patients challenges and needs. Use of the following Scores for this standard set: (1) Patient Reported Outcomes Measurement Information System Short Form version 1.1 Global Health (PROMIS-10) (2) World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0)- 12-item Instrument

18pp EBMT Amyloidosis

- 6/7/16 - 1 form, 21 itemgroups, 424 items, 1 language
Itemgroups: GENERAL INFORMATION TEAM, GENERAL INFORMATION PATIENT, DISEASE, AL AMYLOIDOSIS INITIAL DIAGNOSIS, ORGAN INVOLVEMENT AT DIAGNOSIS, PRE-HSCT TREATMENT, HSCT, STATUS OF DISEASE AT COLLECTION (AUTOGRAFTS ONLY), STATUS OF DISEASE AT START OF CONDITIONING FOR BMT, STATUS OF DISEASE AT 100 DAYS AFTER HSCT, ORGAN-SPECIFIC RESPONSES AT 100 DAYS AFTER HSCT, FORMS TO BE FILLED IN, FOLLOW UP AL AMYLOIDOSIS, PATIENT LAST SEEN, GRAFT VERSUS HOST DISEASE (GvHD) SINCE LAST REPORT, OTHER COMPLICATIONS SINCE LAST REPORT, GRAFT ASSESSMENT AND HAEMOPOIETIC CHIMAERISM, ADDITIONAL THERAPIES SINCE LAST FOLLOW UP, FIRST EVIDENCE OF DISEASE WORSENING SINCE LAST HSCT, LAST DISEASE AND PATIENT STATUS, ADDITIONAL NOTES IF APPLICABLE
DOCUMENTED PATHOGENS (Use this table for guidance on the pathogens of interest) Bacteria: S. pneumoniae, Other gram positive (i.e.: other streptococci, staphylococci, listeria …),Haemophilus influenzae, Other gram negative (i.e.: E. coli klebsiella, proteus, serratia, pseudomonas …), Legionella sp, Mycobacteria sp, Other Fungi: Candida sp, Aspergillus sp, Pneumocystis carinii, Other Parasites: Toxoplasma gondii, Other Viruses: HSV, VZV, EBV, CMV, HHV-6, RSV. Other respiratory virus (influenza, parainfluenza, rhinovirus), Adenovirus, HBV, HCV, HIV,Papovavirus, Parvovirus, Other

Primary Amyloidosis - On-Study Form

- 6/27/15 - 1 form, 4 itemgroups, 64 items, 1 language
Itemgroups: Header, Amyloid: Form Administration, Amyloid: Disease Description, Amyloid: Prior Treatment
Primary Amyloidosis - On-Study Form Source Form: NCI FormBuilder: https://formbuilder.nci.nih.gov/FormBuilder/formDetailsAction.do?method=getFormDetails&formIdSeq=D6E2AA52-99FE-5B44-E034-0003BA12F5E7

Response - Primary Amyloidosis - Baseline Disease Assessment Form - 2275065v3.0 - Primary Amyloidosis - Baseline Disease Assessment Form

- 1/9/15 - 1 form, 9 itemgroups, 83 items, 1 language
Itemgroups: CRF Header, Amyloid: Form Administration, Amyloid: Assessment Reporting Interval, Amyloid: Protein Studies, Amyloid: Peripheral Blood Hematology/Chemistry, Amyloid: Organ Assessment, Amyloid: Bone Marrow Assessment, Amyloid: Amyloidoma, Comments
Primary Amyloidosis - Baseline Disease Assessment Form Source Form: NCI FormBuilder: https://formbuilder.nci.nih.gov/FormBuilder/formDetailsAction.do?method=getFormDetails&formIdSeq=D6E369F3-B8C0-58EE-E034-0003BA12F5E7

Response - Primary Amyloidosis - Follow-Up Disease Assessment Form - 2275307v3.0 - Primary Amyloidosis - Follow-Up Disease Assessment Form

- 1/9/15 - 1 form, 10 itemgroups, 94 items, 1 language
Itemgroups: CRF Header, Amyloid: Form Administration, Amyloid: Assessment Reporting Interval, Amyloid: Protein Studies, Amyloid: Peripheral Blood Hematology/Chemistry, Amyloid: Organ Assessment, Amyloid: Bone Marrow Assessment, Amyloid: Amyloidoma, Amyloid: Objective Response Assessment, Comments
Primary Amyloidosis - Follow-Up Disease Assessment Form Source Form: NCI FormBuilder: https://formbuilder.nci.nih.gov/FormBuilder/formDetailsAction.do?method=getFormDetails&formIdSeq=D6E37EC9-1337-59D5-E034-0003BA12F5E7

Follow-Up - Primary Amyloidosis - Follow Up Form - 2273817v3.0 - Primary Amyloidosis - Follow Up Form

- 1/9/15 - 1 form, 6 itemgroups, 32 items, 1 language
Itemgroups: CRF Header, Amyloidosis: Vital Status, Amyloidosis: Disease Follow-Up Status, Amyloidosis: Notice of Progression, Amyloidosis: Notice of New Primary, Amyloidosis: Long-Term Toxicity
Primary Amyloidosis - Follow Up Form Source Form: NCI FormBuilder: https://formbuilder.nci.nih.gov/FormBuilder/formDetailsAction.do?method=getFormDetails&formIdSeq=D6794088-D3E7-0C48-E034-0003BA12F5E7

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