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Table of contents
  1. 1. Clinical Trial
  2. 2. Routine Documentation
  3. 3. Registry/Cohort Study
  4. 4. Quality Assurance
  5. 5. Data Standard
  6. 6. Patient-Reported Outcome
  7. 7. Medical Specialty
    1. 7.1. Anesthesiology
    1. 7.2. Dermatology
    1. 7.3. ENT
    1. 7.4. Geriatrics
    1. 7.5. Gynecology/Obstetrics
    1. 7.6. Internal Medicine
      1. Hematology
      1. Infectious Diseases
      1. Cardiology/Angiology
      1. Pneumology
      1. Gastroenterology
      1. Nephrology
      1. Endocrinology/Metabolic Diseases
      1. Rheumatology
    1. 7.7. Neurology
    1. 7.8. Ophthalmology
    1. 7.9. Palliative Care
    1. 7.10. Pathology/Forensics
    1. 7.11. Pediatrics
    1. 7.12. Psychiatry/Psychosomatics
    1. 7.13. Radiology
    1. 7.14. Surgery
      1. General/Visceral Surgery
      1. Neurosurgery
      1. Plastic Surgery
      1. Thoracic Surgery
      1. Trauma/Orthopedics
      1. Vascular Surgery
    1. 7.15. Urology
    1. 7.16. Dental Medicine/OMS
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dbGaP phs000428 Health and Retirement Study (HRS) - pht005036.v1.p2

- 1/29/25 - 6 forms, 1 itemgroup, 4 items, 1 language
Itemgroup: pht005036
Principal Investigator: David Weir, PhD, University of Michigan, Ann Arbor, MI, USA MeSH: Aging,Neoplasms,Arthritis,Lung Diseases, Obstructive,Dementia,Heart Diseases,Heart Failure,Hypertension,Myocardial Infarction,Diabetes Mellitus,Hypercholesterolemia,Obesity,Body Weight,Mobility Limitation,Pain,Cholesterol,Hemoglobin A, Glycosylated,C-Reactive Protein,Cystatin C,Depression,Alcohol Drinking,Smoking,Personality,Life Style,Cognition,Demography,Ethnic Groups,Health Status,Population Groups,Housing,Independent Living,Socioeconomic Factors,Career Mobility,Educational Status,Employment,Family Characteristics,Income,Occupations,Poverty,Social Change,Social Class,Social Conditions,Risk Factors https://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/study.cgi?study_id=phs000428 *Introduction to V2: *This data release comprises data from the V1 release combined with approximately 3,000 additional samples, collected during the HRS 2010 field period. The 2010 data include samples from a random half of the new cohort enrolled in 2010 along with a significant expansion of the minority sample. *Description:* The University of Michigan Health and Retirement Study (HRS) is a longitudinal panel study that surveys a representative sample of approximately 20,000 people in America over the age of 50 every two years. Supported by the National Institute on Aging (NIA U01AG009740) and the Social Security Administration, the HRS explores the changes in labor force participation and the health transitions that individuals undergo toward the end of their work lives and in the years that follow. The study collects information about income, work, assets, pension plans, health insurance, disability, physical health and functioning, cognitive functioning, and health care expenditures. Through its unique and in-depth interviews, the HRS provides an invaluable and growing body of multidisciplinary data that researchers can use to address important questions about the challenges and opportunities of aging. Because of its innovation and importance, the HRS has become the model and hub for a growing network of harmonized longitudinal aging studies around the world. *Origins of the HRS.* As the population ages it is increasingly important to obtain reliable data about aging and topics that are relevant to a range of policy issues in aging. To address this need, the National Institutes on Aging (NIA) established a cooperative agreement with the University of Michigan Institute for Social Research to collect such data. The HRS launched data collection in 1992 and has re-interviewed the original sample of respondents every two years since then. By adding new cohorts and refreshing the sample, the HRS has grown to become the largest, most representative longitudinal panel study of Americans 50 years and older. *HRS Study Design.* The target population for the original HRS cohort includes all adults in the contiguous United States born during the years 1931-1941 who reside in households, with a 2:1 oversample of African-American and Hispanic populations. The original sample is refreshed with new birth cohorts (51-56 years of age) every six years. The sample has been expanded over the years to include a broader range of birth cohorts as well. The target population for the AHEAD survey consists of United States household residents who were born in 1923 or earlier. Children of the Depression (CODA) recruits households born 1924-1930, War Babies 1942-47, Early Boomers 1948-53, and Mid-Boomers 1954-59. Data collection includes a mixed mode design combining in-person, telephone, mail, and Internet. For consenting respondents, HRS data are linked at the individual level to administrative records from Social Security and Medicare claims. *Genetic Research in the HRS.* The HRS has genotyped 2.5 million single nucleotide polymorphisms (SNPs) on respondents using Illumina's Human Omni2.5-Quad (Omni2.5) BeadChip. The genotyping was performed by the NIH Center for Inherited Disease Research (CIDR). Saliva was collected on half of the HRS sample each wave starting in 2006. In 2006, saliva was collected using a mouthwash collection method. From 2008 onward, the data collection method switched to the Oragene kit. Saliva completion rates were 83% in 2006, 84% in 2008, and 80% in 2010 among new cohort enrollees. HRS Phenotypic data. Phenotypic data are available on a variety of dimensions. Health measures include physical/psychological self-report, various health conditions, disabilities, cognitive performance, health behaviors (smoking, drinking, exercise), physical performance and anthropomorphic measures, and biomarkers (HbA1c, Total Cholesterol, HDL, CRP, Cystatin-C). Data are also available on health services including utilization, insurance and out-of-pocket spending with linkage to Medicare records. Economic measures include employment status/history, earnings, disability, retirement, type of work, income by source, wealth by asset type, capital gains/debt, consumption, linkage to pensions, Social Security earnings/benefit histories. There is also extensive information on family structure, proximity, transfers to/from of money, time, social and psychological characteristics, as well as a wide range of demographics. Performance on a cognitive test combining immediate and delayed word recall was selected as an example trait for the dbGaP data release. In the immediate word recall task the interviewer reads a list of 10 nouns to the respondent and asks the respondent to recall as many words as possible from the list in any order. After approximately five minutes of asking other survey questions, the respondent is asked to recall the nouns previously presented as part of the immediate recall task. The total recall score is the sum of the correct answers to these two tasks, with a range of 0 to 20. Researchers who wish to link to other HRS measures not in dbGaP will be able to apply for access from HRS. A separate Data Use Agreement (DUA) will be required for linkage to the HRS data. See the HRS website (http://hrsonline.isr.umich.edu/gwas) for details.

Eligibility

1 itemgroup 6 items

pht002612.v2.p2

1 itemgroup 4 items

pht002613.v2.p2

1 itemgroup 5 items

pht002614.v2.p2

1 itemgroup 7 items

pht005037.v1.p2

1 itemgroup 5 items

Measurement Instrument Database for the Social Science (MIDSS) - The Psychosocial Pain Assessment Form (PPAF)

- 1/13/21 - 1 form, 7 itemgroups, 138 items, 1 language
Itemgroups: Pain, Psychosocial assessment, Pain, Psychosocial assessment, Rating scale, Pain, Psychosocial assessment, Economic, Pain, Psychosocial assessment, Social support, Pain, Psychosocial assessment, Activities of Daily Living, Pain, Psychosocial assessment, Emotional support, Pain, Psychosocial assessment, Coping Behavior
Otis-Green, S., & The City of Hope Pain/Palliative Resource Center. (2012) . The Psychosocial Pain Assessment Form (PPAF). Measurement Instrument Database for the Social Science. Retrieved 12.01.2021, from www.midss.ie. Key references: Otis-Green, S. (2006). Psychosocial Pain Assessment Form. In Dow (Ed.), Nursing Care of Women with Cancer. St. Louis, MO: Elsevier Mosby, 556-561. Otis-Green, S. (2005). Psychosocial Pain Assessment Form. In Kuebler, Davis, Moore (Eds.), Palliative Practices: An Interdisciplinary Approach. St. Louis, MO: Elsevier Mosby, 462-467. Primary use / Purpose: The Psychosocial Pain Assessment Form (PPAF) is a comprehensive assessment form for measuring psychosocial pain. It does so under five domains: economic, social support, activities of daily living, emotional impact, and coping style. Additionally, an assessment of prior history is included to help clinicians focus interventions where sexual abuse or other traumatic memories are present. Background: The psychosocial model of pain is now widely accepted. Pain is no longer treated, or thought of, as a purely physiological condition, but instead, one that is the product of a myriad of both psychological and physiological factors. For this reason, there is a need for instruments which measure the full range of outcomes and causes associated with chronic pain, whether they be psychological, economic, or physiological. The Psychosocial Pain Assessment Form (PPAF) was developed to be used in this capacity. Digital Object Identifier (DOI): http://dx.doi.org/10.13072/midss.344

Measurement Instrument Database for the Social Science (MIDSS) - The Patient Pain Questionnaire (PPQ)

- 1/12/21 - 1 form, 3 itemgroups, 16 items, 1 language
Itemgroups: Instructions, Knowledge, Experience
The City of Hope Pain & Palliative Care Resource Center. (2012) . The Patient Pain Questionnaire (PPQ) . Measurement Instrument Database for the Social Science. Retrieved 12.01.2021, from www.midss.ie Key references: Ferrell, B. R., Ferrell, B., Rhiner, M., Grant, M. (1991). Family Factors Influencing Cancer Pain. Post Graduate Medical Journal, 67 (Suppl 2), 64-69. Ferrell, B. R., Rhiner, M., Cohen, M., Grant, M. (1991). Pain as a Metaphor for Illness. Part I: Impact of Cancer Pain on Family Caregivers. Oncology Nursing Forum, 18(8), 1303-1309. Ferrell, B. R., Cohen, M., Rhiner, M., Rozak, A. (1991). Pain as a Metaphor for Illness. Part II: Family Caregivers' Management of Pain. Oncology Nursing Forum,18(8), 1315-1321. Ferrell, B. R., Rhiner, M., Ferrell, B. (1993). Development and Implementation of a Pain Education Program. Cancer, 72(11), 3426-3432. Primary use / Purpose: The Patient Pain Questionnaire (PPQ) is a 16-item ordinal inventory. Its purpose is to measure the knowledge and experience of a cancer patient in managing chronic pain. Background: Cancer pain is recognised as a serious barrier to mental wellbeing in cancer patients. One of the main aims of palliative care is to buffer patients against pain, both mental and physical. By using the Patient Pain Questionnaire (PPQ) and also the related family pain questionnaire (FPQ) clinicians and researchers can gain a clearer understanding of the patient/caregiver perspective and how this might interact with or even predict wellbeing or adjustment to pain. The PPQ can be used by either clinicans or researchers. Psychometrics: The psychometric properties of the Patient Pain Questionnaire (PPQ) are discussed in the introduction to the instrument itself which is attached below. Digital Object Identifier (DOI): http://dx.doi.org/10.13072/midss.332

Eligibility Pain NCT02336529

- 6/13/16 - 1 form, 2 itemgroups, 10 items, 1 language
Itemgroups: Inclusion Criteria, Exclusion Criteria
Nerveblocks for Persistent Pain After Breast Cancer Surgery; ODM derived from: https://clinicaltrials.gov/show/NCT02336529

Eligibility TENS for Cancer Pain Patients DRKS00007990 NCT02655289 DRKS00007990 - Eligibility TENS for Cancer Pain Patients NCT02655289 DRKS00007990

- 7/2/17 - 1 form, 2 itemgroups, 16 items, 1 language
Itemgroups: Inclusion Criteria, Exclusion Criteria
Responsible Party: Waldemar Siemens, MSc, University Hospital Freiburg ClinicalTrials.gov Identifier: NCT02655289 History of Changes Other Study ID Numbers: DRKS00007990 Study First Received: January 8, 2016 Last Updated: May 2, 2017 Transcutaneous Electrical Nerve Stimulation (TENS) for Advanced Cancer Pain Patients ODM derived from: https://clinicaltrials.gov/ct2/show/NCT02655289

Measurement Instrument Database for the Social Science (MIDSS) - The Clinical Decision Making Survey (CDMS)

- 10/11/20 - 1 form, 15 itemgroups, 69 items, 1 language
Itemgroups: Instruction, Pain intensity, Evaluation Method, Pain, Question (Inquiry), Pain intensity (observable entity), rating scale; Pain relief, rating scale, Analgesics, Analgesics, Today, Change of medication, Pain, Evaluation, Documentation, Pain, Prescriptions, Non-drug, Order (action), Pain, Contact with, Physicians, Pain relief, Optimum, Problem, Pain, Decision, Pain management, Conflict (Psychology), Demography, Nurses, Patient
Ferrell, B. R., Eberts, M. T., McCaffery, M., Grant, M.. (2012) . The Clinical Decision Making Survey (CDMS) . Measurement Instrument Database for the Social Science. Retrieved 10.10.2020, from www.midss.ie Key references: Ferrell, B. R., Eberts, M. T., McCaffery, M., Grant, M. (1991). Clinical decision making and pain. Cancer Nurs. 1991 Dec;14(6):289-97. Primary use / Purpose: The Clinical Decision Making Survey (CDMS) is a 14-item survey. Its purpose is to obtain information from nurses relating to their decision making processes when they are dealing with patients who are experiencing pain. Background: Nurses are forced to make difficult decisions when presented with patients who are experiencing pain. Ethical dilemmas can also arise around issues such over-medication, under-medication, and opioid side effects to name a few. It is important to gain an understanding of how nurses make these decisions so that more insight can be gained into the factors influencing those decision making processes. Digital Object Identifier (DOI): http://dx.doi.org/10.13072/midss.329

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