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Primary Palliative Care for Cystic Fibrosis

N/A

Waitlist Available

Led By Anna M Georgiopoulos, MD

Research Sponsored by Massachusetts General Hospital

Eligibility Criteria Checklist

Specific guidelines that determine who can or cannot participate in a clinical trial

Must have

Patients (age > 12 years) with a diagnosis of CF and receiving treatment at participating CF Care Centers

Timeline

Screening 3 weeks

Treatment Varies

Follow Up 2 years

Awards & highlights

Study Summary

This trial will help to improve best practices in generalist-level palliative care in CF by providing a framework for a nationally generalizable model.

Who is the study for?

This trial is for cystic fibrosis patients over 12 years old and their caregivers at participating CF Care Centers. Participants must be willing to complete surveys twice, speak English or Spanish, and provide consent (parents/guardians for minors). Those with severe cognitive impairment or unable to consent are excluded.Check my eligibility

What is being tested?

The trial tests a primary palliative care intervention in CF centers, including screening-and-triage workflows, treatment guides for common issues, education for patients/families/providers, and a QI toolkit. It aims to assess the feasibility of this model across diverse centers.See study design

What are the potential side effects?

Since this study focuses on implementing a care framework rather than testing new medications, traditional side effects aren't expected. However, participants may experience emotional or psychological impacts from discussing palliative care topics.

Eligibility Criteria

Inclusion Criteria

You may be eligible if you check “Yes” for the criteria below

Select...

I am over 12 years old and have cystic fibrosis, receiving care at a CF center.

Timeline

Screening ~ 3 weeks3 visits

Treatment ~ Varies

Follow Up ~ 2 years

Screening ~ 3 weeks

Treatment ~ Varies

Follow Up ~2 years

This trial's timeline: 3 weeks for screening, Varies for treatment, and 2 years for reporting.

Treatment Details

Study Objectives

Outcome measures can provide a clearer picture of what you can expect from a treatment.

Primary outcome measures

Proportion of individuals with CF receiving annual palliative care screening

Secondary outcome measures

Brief Assessment Scale for Caregivers (BASC)

Cystic Fibrosis Questionnaire-Revised (CFQ-R)

Generalized Anxiety Disorder-7 item Scale (GAD-7)

+10 more

Trial Design

1Treatment groups

Experimental Treatment

Group I: Implementation of Primary Palliative Care Intervention in CF CentersExperimental Treatment1 Intervention

Implement a Primary Palliative Care intervention comprising screening-and-triage workflows, best practice treatment guides for high frequency problems, patient/family and provider education, and a quality improvement (QI) toolkit in 5 CF centers.

0 / 1Eligibility criteria met

Find a Location

Who is running the clinical trial?

Stony Brook UniversityOTHER

213 Previous Clinical Trials

38,884 Total Patients Enrolled

2 Trials studying Cystic Fibrosis

115 Patients Enrolled for Cystic Fibrosis

Feinstein Institute for Medical ResearchOTHER

21 Previous Clinical Trials

5,029 Total Patients Enrolled

Massachusetts General HospitalLead Sponsor

2,928 Previous Clinical Trials

13,197,712 Total Patients Enrolled

8 Trials studying Cystic Fibrosis

784 Patients Enrolled for Cystic Fibrosis

Frequently Asked Questions

These questions and answers are submitted by anonymous patients, and have not been verified by our internal team.

Is there still availability for individuals to join this clinical investigation?

"The information on clinicaltrials.gov reveals that this trial is currently recruiting participants, having first been posted on June 25th 2021 and was most recently updated in mid-November of the same year."

Answered by AI

What is the total number of participants involved in this research project?

"Affirmative. Clinicaltrials.gov has the latest information on this trial, which was first announced on June 25th 2021 and most recently updated November 15th of the same year. This study is seeking 1001 participants from 5 different clinical sites."

Answered by AI

Recent research and studies

New England Journal of MedicineJournal

Generalist Plus Specialist Palliative Care — Creating a More Sustainable Model

Quill, Timothy E., and Amy P. Abernethy. 2013. “Generalist Plus Specialist Palliative Care — Creating a More Sustainable Model”. New England Journal of Medicine. Massachusetts Medical Society. doi:10.1056/nejmp1215620.

Journal of Cystic FibrosisJournal

The CF-CARES Primary Palliative Care Model: A Cf-specific Structured Assessment of Symptoms, Distress, and Coping

Friedman, Deborah, Rachel W. Linnemann, Lily L. Altstein, Suhayla Islam, Kieu-Tram Bach, Chelsea Lamb, John Volpe, et al.. 2018. “The CF-CARES Primary Palliative Care Model: A Cf-specific Structured Assessment of Symptoms, Distress, and Coping”. Journal of Cystic Fibrosis. Elsevier BV. doi:10.1016/j.jcf.2017.02.011.

Journal of Pain and Symptom ManagementJournal

The Measurement of Symptoms in Children with Cancer

Collins, John J., Maura E. Byrnes, Ira J. Dunkel, Jeanne Lapin, Traci Nadel, Howard T. Thaler, Tanya Polyak, Bruce Rapkin, and Russell K. Portenoy. 2000. “The Measurement of Symptoms in Children with Cancer”. Journal of Pain and Symptom Management. Elsevier BV. doi:10.1016/s0885-3924(00)00127-5.

JamaJournal