Management of patients with rare blood groups in maternity
Sign Up to like & getrecommendations! Published in 2019 at "Journal of Obstetrics and Gynaecology"
DOI: 10.1080/01443615.2019.1629400
Abstract: Abstract We report on our experiences since 2010 with pregnant women with rare blood types. The lack of compatible blood is a challenge for the anaesthetist whose priority is to prevent and treat anaemia in… read more here.
Keywords: pregnancy; blood groups; obstetrics; patients rare ... See more keywords
Rare cancer and return to work: experiences and needs of patients and (health care) professionals.
Sign Up to like & getrecommendations! Published in 2022 at "Disability and rehabilitation"
DOI: 10.1080/09638288.2022.2099589
Abstract: PURPOSE Patients with a rare cancer often face delays in their diagnostic and treatment trajectory, which may affect their work. In this study, we explored experiences and needs of: 1) patients with a rare cancer… read more here.
Keywords: experiences needs; care; rare cancer; work ... See more keywords
Organ donation from patients with a rare disease is often safe: the italian guidelines
Sign Up to like & getrecommendations! Published in 2022 at "Clinical Transplantation"
DOI: 10.1111/ctr.14769
Abstract: Although a disease is defined as rare when it has a prevalence of less than 1:2000, the overall prevalence of rare diseases in the population is greater than 1%. Among potential organ donors, a similar… read more here.
Keywords: rare disease; disease; donation patients; organ donation ... See more keywords
Treatment of patients with rare bleeding disorders in the Netherlands: Real‐life data from the RBiN study
Sign Up to like & getrecommendations! Published in 2022 at "Journal of Thrombosis and Haemostasis"
DOI: 10.1111/jth.15652
Abstract: Patients with rare inherited bleeding disorders (RBDs) exhibit hemorrhagic symptoms, varying in type and severity, often requiring only on‐demand treatment. Prolonged bleeding after invasive procedures is common. Adequate peri‐procedural therapy may reduce this bleeding risk. read more here.
Keywords: treatment patients; disorders netherlands; rare bleeding; bleeding disorders ... See more keywords
Prevalence and practice for rare diseases in primary care: a national cross-sectional study in the USA
Sign Up to like & getrecommendations! Published in 2019 at "BMJ Open"
DOI: 10.1136/bmjopen-2018-027248
Abstract: Objectives There are more than 7000 rare diseases in the USA, and they are prevalent in 8% of the population. Due to life-threatening risk and limited therapies, early detection and treatment are critical. The purpose… read more here.
Keywords: rare diseases; primary care; study; patients rare ... See more keywords
Acceptance and commitment therapy meets peer-support. Development of a supportive self-care intervention for patients with rare diseases: a multistage development process
Sign Up to like & getrecommendations! Published in 2021 at "BMJ Open"
DOI: 10.1136/bmjopen-2020-042856
Abstract: Objective We aimed at developing a patient-centred self-help programme, tailored to the needs of patients with rare chronic diseases. Design Multistage, multimethod development process including a survey with validated self-report scales and open-ended questions (phase… read more here.
Keywords: intervention; phase; rare diseases; patients rare ... See more keywords
Decrease in tumor content assessed in biopsies is associated with improved treatment outcome response to pembrolizumab in patients with rare tumors
Sign Up to like & getrecommendations! Published in 2020 at "Journal for Immunotherapy of Cancer"
DOI: 10.1136/jitc-2020-000665
Abstract: Background Decreased tumor content (TC) in resection specimens after neoadjuvant therapy is used to predict prognosis. We investigated whether TC assessed in biopsy specimens or the shift in TC from baseline to on-treatment can be… read more here.
Keywords: baseline treatment; response; treatment; patients rare ... See more keywords
Patients with Rare Cancers in the Drug Rediscovery Protocol (DRUP) Benefit from Genomics-Guided Treatment
Sign Up to like & getrecommendations! Published in 2022 at "Clinical Cancer Research"
DOI: 10.1158/1078-0432.ccr-21-3752
Abstract: Abstract Purpose: Patients with rare cancers (incidence less than 6 cases per 100,000 persons per year) commonly have less treatment opportunities and are understudied at the level of genomic targets. We hypothesized that patients with… read more here.
Keywords: benefit; drug; treatment; rare cancers ... See more keywords
How are patients with rare diseases and their carers in the UK impacted by the way care is coordinated? An exploratory qualitative interview study
Sign Up to like & getrecommendations! Published in 2021 at "Orphanet Journal of Rare Diseases"
DOI: 10.1186/s13023-020-01664-6
Abstract: Background Care coordination is considered important for patients with rare conditions, yet research addressing the impact of care coordination is limited. This study aimed to explore how care coordination (or lack of) impacts on patients… read more here.
Keywords: care coordination; study; patients rare; care ... See more keywords
Improving care delivery for patients with rare cancers: A phase II trial of durvalumab in combination with tremilumimab in subjects with advanced rare tumors in a large community health care system.
Sign Up to like & getrecommendations! Published in 2018 at "Journal of Clinical Oncology"
DOI: 10.1200/jco.2018.36.15_suppl.e18535
Abstract: e18535Background: Patients with rare cancers are an underserved population with limited access to clinical trials aside from Phase I trials in the refractory setting. Providing access to immunother... read more here.
Keywords: care delivery; patients rare; delivery patients; rare cancers ... See more keywords
Patients with rare diseases: from therapeutic orphans to pioneers of personalized treatments
Sign Up to like & getrecommendations! Published in 2018 at "EMBO Molecular Medicine"
DOI: 10.15252/emmm.201708365
Abstract: Common diseases, such as cancer, diabetes mellitus, or Alzheimer's disease, affect a large segment of the population, which justifies the enormous financial allocations for translational and clinical research. In contrast, the ~5,000 known rare disorders… read more here.
Keywords: medicine; orphans pioneers; rare diseases; therapeutic orphans ... See more keywords