# Health-related quality of life and productivity burden for non-professional caregivers of adults with rare diseases: a real-world study

**Type:** Papers  
**Canonical URL:** https://scholariq.org/papers/health-related-quality-of-life-and-productivity-burden-for-non-professional/

## Facts

| Field | Value |
| --- | --- |
| Author Names | Ben Johnson,Gregor Gibson,Daniel Baskerville,Giorgio Castellano,Jonathan de Courcy,Halima Iqbal,James Piercy,Angela Williams,Rafael Pinedo‐Villanueva,Angela Rylands |
| Citations | 4 |
| DOI | 10.1186/s13023-025-03796-z |
| Fields | Biochemistry, Genetics and Molecular Biology,Medicine |
| Open Access | true |
| OA Status | gold |
| OA URL | https://ojrd.biomedcentral.com/counter/pdf/10.1186/s13023-025-03796-z |
| OpenAlex ID | https://openalex.org/W4411103622 |
| PMID | 40481583 |
| Type | article |
| Year | 2025 |

## Paper authors

- [Ben Johnson](https://scholariq.org/researchers/ben-johnson/)
- [James Piercy](https://scholariq.org/researchers/james-piercy/)
- [Angela Williams](https://scholariq.org/researchers/angela-williams/)
- [Jonathan de Courcy](https://scholariq.org/researchers/jonathan-de-courcy/)
- [Rafael Pinedo‐Villanueva](https://scholariq.org/researchers/rafael-pinedo-villanueva/)

## Paper journal

- [Orphanet Journal of Rare Diseases](https://scholariq.org/journals/orphanet-journal-of-rare-diseases/)

## Paper primary topic

- [Amyotrophic Lateral Sclerosis Research](https://scholariq.org/topics/amyotrophic-lateral-sclerosis-research/)

## Paper topics

- [Amyotrophic Lateral Sclerosis Research](https://scholariq.org/topics/amyotrophic-lateral-sclerosis-research/)
- [Genomics and Rare Diseases](https://scholariq.org/topics/genomics-and-rare-diseases/)
- [Lysosomal Storage Disorders Research](https://scholariq.org/topics/lysosomal-storage-disorders-research/)

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Source: ScholarIQ — public research metadata, principally OpenAlex. See https://scholariq.org/sources/ for provenance and https://scholariq.org/methodology/ for what these figures mean.