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PCRC De-identified Data Repository (DiDR) Studies

Search and browse available data in the PCRC DiDR

Title	Enrollment	Study Summary
Psychological Intervention for Caregivers of Patients with Malignant GIiomas	10	Download
QDACT-PC Feasibility	14
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
Understanding The Perspectives Of Palliative Care And Advance Care Planning In Patients With Pulmonary Arterial Hypertension And The Physicians Caring For Them	30	Download
Unplanned Admission to the ICU: A Qualitative Study Examining Family Member Experiences	17

Search by Keyword

Condition Studied

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

Adult

Geriatric

Pediatric

Participant Race

< 25% Non-Hispanic White

≥ 25% Non-Hispanic White

Participant Sex

Both male and female participants

Only female participants

Only male participants

Therapeutic Area

Cancers

Cardiovascular

Gastrointestinal

Hepatic

Infectious

Multi-Systemic

Neurologic/Neurodegenerative

Pulmonary

Renal

Total Enrollment

< 50

50 – 99

100 – 199

200 – 299

300 – 399

400 – 499

≥ 500

Data Type

Mixed Methods

Qualitative

Quantitative

Number of Study Sites

1

2 – 4

5 – 10

11 - 15

> 15

Participant Type

Caregiver

Health Care Provider

Patient

Study Design

Intervention

Observational – cross-sectional

Observational – longitudinal

Study Setting

Assisted Living

Clinic-Ambulatory

Domiciliary-Boarding Home

Home

Hospital

Nursing Home

Other Setting