NCT03558386

Brief Summary

This is a multi-center, Phase II, cross-sectional study comparing quality of life (QOL) as assessed by patient-reported outcomes (PROs) in older (≥65 years) adults vs younger (55-64 years) undergoing allogeneic hematopoietic cell transplantation (HCT) for myelodysplastic syndromes (MDS).

Trial Health

87
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
92

participants targeted

Target at P50-P75 for all trials

Timeline
Completed

Started Jul 2018

Geographic Reach
1 country

6 active sites

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

First Submitted

Initial submission to the registry

April 10, 2018

Completed
2 months until next milestone

First Posted

Study publicly available on registry

June 15, 2018

Completed
1 month until next milestone

Study Start

First participant enrolled

July 23, 2018

Completed
1.3 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

November 15, 2019

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

November 15, 2019

Completed
Last Updated

December 2, 2020

Status Verified

November 1, 2020

Enrollment Period

1.3 years

First QC Date

April 10, 2018

Last Update Submit

November 30, 2020

Conditions

Outcome Measures

Primary Outcomes (1)

  • Long-term post-HCT QOL (in particular physical function and fatigue) for transplant recipients ≥65 years old to those 55-64 years old.

    The primary objective is to compare the change in long-term post-HCT QOL (in particular physical function and fatigue) for transplant recipients ≥65 years old to those 55-64 years old as measured by the assessment and when the assessment occurred at a post-HCT timepoint.

    Those completing the assessment at one timepoint 6 months-1 year post-HCT, Those completing the assessment at one timepoint 1 year - 3 years post-HCT, Those completing the assessment at one timepoint Greater than 3 years post-HCT

Secondary Outcomes (3)

  • Domain-specific QOL scores by age group as assessed by PROMIS measures.

    6 months-1 year post-HCT, 1 year - 3 years post-HCT, 3 years+ post-HCT

  • To explore the feasibility of electronic PROs (ePRO) collection in recipients ≥65 years old and to compare their compliance to that in recipients 55-64, by evaluating completion rate of the assessment by subjects by age group.

    Those completing the assessment at one timepoint 6 months-1 year post-HCT, Those completing the assessment at one timepoint 1 year - 3 years post-HCT, Those completing the assessment at one timepoint Greater than 3 years post-HCT

  • To identify factors associated with poor compliance with reporting one-time single time ePRO measures in both age groups, by categorizing and quantifying reasons why subjects chose not to participate.

    Those completing the assessment at one timepoint 6 months-1 year post-HCT, Those completing the assessment at one timepoint 1 year - 3 years post-HCT, Those completing the assessment at one timepoint Greater than 3 years post-HCT

Study Arms (2)

Patients between 55-64 years of age

Patients between 55-64 years who have had a transplant at the following time points: * 6 months to 1 year ago * 1 year to 3 years ago * 3 years ago or more

Behavioral: ePRO survey

Patients 65+ years of age

Patients 65+ years of age who have had a transplant at the following time points: * 6 months to 1 year ago * 1 year to 3 years ago * 3 years ago or more

Behavioral: ePRO survey

Interventions

ePRO surveyBEHAVIORAL

An electronic patient reported outcomes survey will be completed by the patient.

Patients 65+ years of agePatients between 55-64 years of age

Eligibility Criteria

Age55 Years+
Sexall
Healthy VolunteersNo
Age GroupsAdult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

All subjects previously enrolled on the 10-CMSMDS-1 protocol at participating centers will be assessed for eligibility into this protocol. Those meeting inclusion and exclusion criteria and consenting to participate will be enrolled.

You may qualify if:

  • In order to be eligible to participate on this study, an individual must meet all of the following criteria:
  • Underwent an allogeneic HCT for MDS on the 10-CMSMDS-1 protocol
  • Prior consent to research and future contact by the CIBMTR
  • Ability to provide RCI BMT protocol 17-ePRO signed and dated informed consent form (ICF)
  • Age ≥55 years at time of transplant
  • Fluent in English or Spanish
  • Greater than 6 months post-HCT

You may not qualify if:

  • An individual who meets any of the following criteria will be excluded from participation on this study.
  • No access to an internet browser or email account
  • Within 6 months of first HCT for MDS on the 10-CMSMDS-1 protocol

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (6)

Stanford University

Stanford, California, 94304, United States

Location

H. Lee Moffitt Cancer Center and Research Institute

Tampa, Florida, 33612, United States

Location

Karmanos Cancer Institute

Detroit, Michigan, 48201, United States

Location

Memorial Sloan Kettering Cancer Center

New York, New York, 10065, United States

Location

The Ohio State University

Columbus, Ohio, 43210, United States

Location

Froedtert Memorial Lutheran Hospital

Milwaukee, Wisconsin, 53226, United States

Location

MeSH Terms

Conditions

Myelodysplastic Syndromes

Condition Hierarchy (Ancestors)

Bone Marrow DiseasesHematologic DiseasesHemic and Lymphatic Diseases

Study Officials

  • Bronwen E Shaw, MD, PhD

    Center for International Blood and Marrow Transplant Research (CIBMTR)/Medical College of Wisconsin

    PRINCIPAL INVESTIGATOR

Study Design

Study Type
observational
Observational Model
CASE CONTROL
Time Perspective
PROSPECTIVE
Sponsor Type
NETWORK
Responsible Party
SPONSOR

Study Record Dates

First Submitted

April 10, 2018

First Posted

June 15, 2018

Study Start

July 23, 2018

Primary Completion

November 15, 2019

Study Completion

November 15, 2019

Last Updated

December 2, 2020

Record last verified: 2020-11

Data Sharing

IPD Sharing
Will not share

Locations