China
Africa
Explore chapters and articles related to this topic
Harmonizing Outcomes for Genomic Medicine: Comparison of eMERGE Outcomes to ClinGen Outcome/Intervention Pairs
Published in Shaker A. Mousa, Raj Bawa, Gerald F. Audette, The Road from Nanomedicine to Precision Medicine, 2020
Janet L. Williams, Wendy K. Chung, Alex Fedotov, Krzysztof Kiryluk, Chunhua Weng, John J. Connolly, Margaret Harr, Hakon Hakonarson, Kathleen A. Leppig, Eric B. Larson, Gail P. Jarvik, David L. Veenstra, Christin Hoell, Maureen E. Smith, Ingrid A. Holm, Josh F. Peterson, Marc S. Williams
Another limitation of this study was the outcomes and process measures such as cost, reimbursement, institutional visibility, access, etc., which also play a role in decisions about implementation were not assessed. We also did not focus on patient-centered outcomes, which are not always aligned with health or other outcomes. Measuring outcomes from the perspective of the patient has been identified as a deficiency in much medical research as evidenced by the creation of the Patient-centered Outcomes Research Institute (PCORI) in 2010 [30]. The PCORI vision statement (“patients and the public have the information they can use to make decisions that reflect their desired health outcomes”) emphasizes that part of precision medicine is understanding what outcomes the patient desires, which will vary from patient to patient. Patient engagement is a key part of the All of Us project [5], therefore, developing and harmonizing patient-centered outcomes for genomic medicine is important. Of interest, the NIH funded the development and harmonization of a large set of patient-centered outcome measures now included in the Patient-Reported Outcomes Measurement Information System (PROMIS®) [31] made available through the Department of Health and Human Services. These measures can be reviewed and revised as necessary to develop patient-reported outcomes for genomic medicine. This also illustrates that a process led by the NIH to collect and harmonize outcome measures across its portfolio of projects is a successful approach and can promote the use of standardized measures going forward.
Harmonizing Outcomes for Genomic Medicine: Comparison of eMERGE Outcomes to ClinGen Outcome/Intervention Pairs
Published in Shaker A. Mousa, Raj Bawa, Gerald F. Audette, The Road from Nanomedicine to Precision Medicine, 2019
Janet L. Williams, Wendy K. Chung, Alex Fedotov, Krzysztof Kiryluk, Chunhua Weng, John J. Connolly, Margaret Harr, Hakon Hakonarson, Kathleen A. Leppig, Eric B. Larson, Gail P. Jarvik, David L. Veenstra, Christin Hoell, Maureen E. Smith, Ingrid A. Holm, Josh F. Peterson, Marc S. Williams
Another limitation of this study was the outcomes and process measures such as cost, reimbursement, institutional visibility, access, etc., which also play a role in decisions about implementation were not assessed. We also did not focus on patient-centered outcomes, which are not always aligned with health or other outcomes. Measuring outcomes from the perspective of the patient has been identified as a deficiency in much medical research as evidenced by the creation of the Patient-centered Outcomes Research Institute (PCORI) in 2010 [30]. The PCORI vision statement (“patients and the public have the information they can use to make decisions that reflect their desired health outcomes”) emphasizes that part of precision medicine is understanding what outcomes the patient desires, which will vary from patient to patient. Patient engagement is a key part of the All of Us project [5], therefore, developing and harmonizing patient-centered outcomes for genomic medicine is important. Of interest, the NIH funded the development and harmonization of a large set of patient-centered outcome measures now included in the Patient-Reported Outcomes Measurement Information System (PROMIS®) [31] made available through the Department of Health and Human Services. These measures can be reviewed and revised as necessary to develop patient-reported outcomes for genomic medicine. This also illustrates that a process led by the NIH to collect and harmonize outcome measures across its portfolio of projects is a successful approach and can promote the use of standardized measures going forward.
Heading and unintentional head impacts have opposing associations with Patient Reported Outcomes in amateur soccer players
Published in Research in Sports Medicine, 2018
Liane E. Hunter, Chloe Ifrah, Molly E. Zimmerman, Mimi Kim, Richard B. Lipton, Walter F. Stewart, Michael L. Lipton
PROs are emerging as an important tool to measure quality of life, mood, sleep hygiene and other factors based on self -report (Snyder, Jensen, Segal, & Wu, 2013). There is growing recognition that traditional neuropsychological batteries may not fully capture the scope of impairment in mild head traumas (Resch et al., 2016; Sbordone, 2010, 2014). Instead, PROs provide a person-centered approach to accessing day-to day functioning in the general population as well as those with chronic disorders including Traumatic Brain Injuries (TBIs) (Polinder, Haagsma, van Klaveren, Steyerberg, & van Beeck, 2015). Moreover, PROs can identify individuals at risk for hospital readmission (Hinami, Smith, Deamant, DuBeshter, & Trick, 2015) and later mortality (DeSalvo, Bloser, Kristi, He, & Muntner, 2006). The National Institute of Health's (NIH) Patient Reported Outcome Measurement Information System (PROMIS) is one of the most well regarded PROs. PROMIS utilizes advanced psychometric modeling as well as computerized adaptive testing to probe a range of physical, emotional and social health outcomes applicable to the general population (Cella et al., 2007).
A post-market, randomized, controlled, prospective study evaluating intrathecal pain medication versus conventional medical management in the non-cancer, refractory, chronic pain population (PROSPER)
Published in Expert Review of Medical Devices, 2022
Jason E. Pope, Navdeep Jassal, Dawood Sayed, Denis Patterson, Gladstone McDowell, Anjum Bux, Phillip Lim, Eric Chang, Ali Nairizi, Samuel Grodofsky, Timothy R Deer
Randomization commenced as detailed above and baseline demographic information and assessments were performed, including the PROMIS 29 v2.1 and the numerical pain rating scale (NPRS). The PROMIS-29 v2.1 consists of seven domains, with evaluation based on the general population, reported as a t score, for measuring pain interference, sleep disturbance, fatigue, anxiety, depression, social participation, and physical function, with instruments of PROMIS SF v1.0 Pain Interference 4a, PROMIS SF v1.0 Sleep Disturbance 4a, PROMIS SF v1.0 Fatigue 4a, PROMIS SF v1.0 Anxiety 4a, PROMIS SF V1.0, Depression 4a, PROMIS SF v2.0, Ability to Participate in Social Roles and Activities 4a, and PROMIS SF v1.0 Physical Function 4a.
Six Month Interim Outcomes from SECURE: A Single arm, Multicenter, Prospective, Clinical Study on a Novel Minimally Invasive Posterior Sacroiliac Fusion Device
Published in Expert Review of Medical Devices, 2022
Aaron K. Calodney, Nomen Azeem, Patrick Buchanan, Ioannis Skaribas, Ajay Antony, Christopher Kim, George Girardi, Chau Vu, Christopher Bovinet, Rainer S. Vogel, Sean Li, Naveep Jassal, Youssef Josephson, Timothy R. Lubenow, Nicholas Girardi, Jason E. Pope
The PROMIS-29 v2.1 consists of 7 domains, with evaluation based on the general population, reported as a t score, for measuring pain interference, sleep disturbance, fatigue, anxiety, depression, social participation, and physical function, with instruments of PROMIS SF v1.0 Pain Interference 4a, PROMIS SF v1.0 Sleep Disturbance 4a, PROMIS SF v1.0 Fatigue 4a, PROMIS SF v1.0 Anxiety 4a, PROMIS SF V1.0, Depression 4a, PROMIS SF v2.0, Ability to Participate in Social Roles and Activities 4a, and PROMIS SF v1.0 Physical Function 4a.