ArticleJournal of palliative medicine2016
The Spectrum of Caregiving in Palliative Care for Serious, Advanced, Rare Diseases: Key Issues and Research Directions.
Article in Journal of palliative medicine, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
23 citing papers in PubMed.
- Advance Care Planning for Children With Rare Diseases: A Pilot RCT.Pediatrics · 2024Trial
- Early Palliative Care in Degos Disease: A Case for Proactive Support in Rare, Life-Limiting Illnesses.Cureus · 2026Article
- An Australian standard of care for Niemann-Pick disease type C.Internal medicine journal · 2026Article
- Understanding the health-related quality of life impacts of caring for children and adolescents with rare progressive life-limiting conditions: key challenges and future research priorities.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Patients and treatments in a neuropalliative outpatient clinic: an analysis of clinical routine data from five years of care.Frontiers in neurology · 2025Article
- Navigating the Unique Challenges of Caregiving for Children with Rare Diseases: Are the Care Experiences of All Caregivers the Same? A Focus on Life-Limiting Rare Diseases.Journal of clinical medicine · 2024Article
- Rare diseases: still on the fringes of universal health coverage in Europe.The Lancet regional health. Europe · 2024Review
- Knowledge and Awareness of Rare Diseases Among Healthcare Professionals in the Kingdom of Bahrain.Cureus · 2023Article
- Pharmacists are initiators in palliative care for patients with rare diseases.Orphanet journal of rare diseases · 2023Article
- Rarecare: A policy perspective on the burden of rare diseases on caregivers in Latin America.Frontiers in public health · 2023Review
- Family caregivers of children and adolescents with rare diseases: a novel palliative care intervention.BMJ supportive & palliative care · 2022Article
- OARD: Open annotations for rare diseases and their phenotypes based on real-world data.American journal of human genetics · 2022Article
- Documentation of Psychosocial Distress and Its Antecedents in Children with Rare or Life-Limiting Chronic Conditions.Children (Basel, Switzerland) · 2022Article
- Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases.Children (Basel, Switzerland) · 2022Article
- Parents Are the Experts: A Qualitative Study of the Experiences of Parents of Children With Severe Neurological Impairment During Decision-Making.Journal of pain and symptom management · 2021Article
- Verifying intervention fidelity procedures for a palliative home care intervention with pilot study results.Research in nursing & health · 2021Article
- Experience of health care at a reference centre as reported by patients and parents of children with rare conditions.Orphanet journal of rare diseases · 2021Article
- Perceived Benefits and Facilitators and Barriers to Providing Psychosocial Interventions for Informal Caregivers of People with Rare Diseases: A Scoping Review.The patient · 2020Article
- Palliative care for rare advanced lung diseases in underserved Appalachia: Study protocol for a randomized controlled trial.Journal of advanced nursing · 2020Article
- The unique burden of rare cancer caregiving: caregivers of patients with Erdheim-Chester disease.Leukemia & lymphoma · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Rare diseases are often life-limiting conditions, the majority of which require constant caregiving needs. The realization of a spectrum of palliative care throughout the trajectory of rare diseases could ensure individualized and caregiver-focused approaches to the care of patients and families. In June 2015, the National Institute of Nursing Research (NINR), the lead institute at the National Institutes of Health for end-of-life research, in conjunction with the National Center for Advancing Translational Sciences, Office of Rare Diseases Research (ORDR) held an interdisciplinary workshop on the unique challenges of caregiving and palliative care in adult and pediatric rare diseases. The panel identified gaps in current knowledge, and afforded suggestions for research opportunities in palliative care science to improve the care of individuals with serious, advanced, rare diseases and their caregivers. This meeting provided an in-depth opportunity to incorporate new concepts into palliative and end-of-life care for individuals with a range of rare diseases and their caregivers. This report presents a summary of the workshop.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.