• Login

• About
  • Mission
  • Where Our Members Are Located
  • History of the PCRC
  • PCRC Charter
  • Frequently Asked Questions
• Membership
  • Becoming a Member
  • Membership Roster
  • Organizational Leads
  • Member Meetings
  • Members Access - COMING SOON!
• Research
  • Investigator Support Information
    • Collaborating with PCRC
    • Letter of Support
    • IDC Webinar Series
    • Clinical Trials Intensives
  • Conduct Your Research Through the PCRC
    • Pilot Grant Process
    • Extramural Grant Process
    • PCRC Data Available for Secondary Analysis
  • Pilot Studies
  • Active Clinical Studies
• Funding Opportunities
  • PCRC Pilot Funding
  • Extramural Funding & Training Opportunities
• Cores/Centers
  • Measurement Core
    • PCRC Instrument Library
    • Instrument Systematic Reviews
    • Implement Patient-Reported Outcomes (PROs) in Research Studies
    • Measurement References
  • Investigator Development Center (IDC)
    • IDC Webinar Series
    • Clinical Trials Intensives
    • Mentorship Selective
    • Special Interest Groups
    • Training Videos
  • Data, Informatics & Statistics Core (DISC)
    • PCRC Data Repository
      • Browse Available Studies
      • View Previous Requests
    • Qualitative and Mixed-Methods Research Library
    • Standardized Data Elements
  • Caregiver Core
    • Caregiver Profile Fact Sheets
    • Example of Proposal
  • Clinical Studies/Methodology Core
    • Clinical Studies Library
  • Project Coordinating Center
• News & Publications
  • Upcoming Events & Presentations
  • PCRC News
  • PCRC Publications
  • Newsletters
  • Funding Acknowledgement
• Who We Are
  • Committee/Task Force Call For Applications
  • Steering Committee
  • Scientific Review Committee
  • PCRC Operations
  • Membership Committee
  • External Advisory Board
• Resources
  • Training Videos
  • Documents

PCRC De-identified Data Repository (DiDR) Studies

Search and browse available data in the PCRC DiDR

Title	Enrollment	Study Summary
Anticoagulation Therapy on Discharge to Hospice Care	1141
Barriers to Hospice and Palliative Care Utilization	287	Download
Choice Sets for Advance Directives	316
Consumer Engagement to Increase Advance Care Planning	491
Culturally Sensitive End-Of-Life Care Intervention	22	Download
Family Experiences in ICU Transfers	34	Download
FOCIS	188
Hospice Bereavement Service Delivery to Family Members and Friends With Bereavement-Related Mental Health Symptoms	3561	Download
Is death rattle a phenomenon that requires medical treatment?	71
Patient-Centered Disease Management for Heart Failure (PCDM)	392	Download
Patient-reported Distress in Adults with Myelodysplastic Syndromes (MDS)	124
Provider and Organizational Norms of Treatment for Seriously Ill Elders	153
Psychological Intervention for Caregivers of Patients with Malignant GIiomas	10	Download
Rater Intensity Psychometrics of the Respiratory Distress Observation Scale Patient Data	136
RDOS Cut-point Substantiation Study	84
Reducing End-of-Life Symptoms with Touch (REST)	380	Download
Refinement of a Prognostic Model for Patients with Metastatic Cancer	3913	Download
Statin Discontinuation	381	Download
Surrogate Storytelling	32
Testing PCforMe: a Web-Based Tool to Prepare Patients for Palliative Care	80	Download
The Impact of Age on Early Palliative Care for Patients with Advanced Cancer	350	Download
Translation of a Lung Cancer Palliative Care Intervention for Clinical Practice	324	Download

Search by Keyword

Condition Studied

Select All

Select None

Acute Kidney Injury

Amyotrophic Lateral Sclerosis (ALS)

Bacterial Endocarditis

Bladder (including Urethral) Cancer

Brain Cancer

Breast Cancer

Bronchiectasis

Cirrhosis (non-viral)

Colon, Rectal, or Anal cancer

Connective Tissue Disease

COPD (including emphysema and chronic bronchitis)

Coronary artery Disease (including Myocardial Infarction)

Cystic Fibrosis

Dementia

Diabetes (uncomplicated)

Diabetes (with end organ damage)

End-Stage Renal Disease

Head and Neck Cancer

Heart Failure

Hemi- or Para-plegia

HIV/AIDS

Ischemic colitis (including bowel perforation)

Leukemia (including MDS)

Lung (non-small cell)

Lung (small cell)

Lymphoma

Melanoma

Multiple contributing Conditions

Multiple Myeloma (including amyloidosis)

Multiple sclerosis

Osteomyelitis

Other Cancer

Other Cardiovascular Disease

Other GI Disease

Other Infectious Disease

Other Neurological Disease

Other Pulmonary Disease

Other Renal Disease

Other upper GI (liver, gastric esophageal, carcinoid, etc.) Cancer

Ovarian/peritoneal Cancer

Pancreatic Cancer

Parkinson’s Disease

Peripheral Vascular Disease

Pneumonia

Prostate Cancer

Pulmonary Fibrosis, ILD, and other restrictive lung disease

Pulmonary Hypertension

Renal Cancer

Restrictive Heart Disease

Severe debility

Severe GI bleed

Stroke (hemorrhagic)

Stroke (ischemic/embolic)

Thyroid Cancer

Traumatic Brain Injury (TBI)

Ulcer Disease

Uterine, Cervical, or Vaginal Cancer

Valvular Heart Disease

Viral Hepatitis/Cirrhosis

Participant Age

Select All

Select None

Adult

Geriatric

Pediatric

Participant Race

Select All

Select None

< 25% Non-Hispanic White

≥ 25% Non-Hispanic White

Participant Sex

Select All

Select None

Both male and female participants

Only female participants

Only male participants

Therapeutic Area

Select All

Select None

Cancers

Cardiovascular

Gastrointestinal

Hepatic

Infectious

Multi-Systemic

Neurologic/Neurodegenerative

Pulmonary

Renal

Total Enrollment

Select All

Select None

< 50

50 – 99

100 – 199

200 – 299

300 – 399

400 – 499

≥ 500

Data Type

Select All

Select None

Mixed Methods

Qualitative

Quantitative

Number of Study Sites

Select All

Select None

1

2 – 4

5 – 10

11 - 15

> 15

Participant Type

Select All

Select None

Caregiver

Health Care Provider

Patient

Study Design

Select All

Select None

Intervention

Observational – cross-sectional

Observational – longitudinal

Study Setting

Select All

Select None

Assisted Living

Clinic-Ambulatory

Domiciliary-Boarding Home

Home

Hospital

Nursing Home

Other Setting