Evaluating quality of life tools in North American patients with erythropoietic protoporphyria and X‐linked protoporphyria-Reference-Cited by-同舟云学术

Evaluating quality of life tools in North American patients with erythropoietic protoporphyria and X‐linked protoporphyria

Published:2019-09-14 Issue:1 Volume:50 Page:9-19
ISSN:2192-8312
Container-title:JIMD Reports
language:en
Short-container-title:JIMD Reports

Author:

Naik Hetanshi¹,Overbey Jessica R.²,Desnick Robert J.¹,Anderson Karl E.³,Bissell D. Montgomery⁴,Bloomer Joseph⁵,Bonkovsky Herbert L.⁶,Phillips John D.⁷,Wang Bruce⁴,Singal Ashwani⁵,Balwani Manisha¹

Affiliation:

1. Department of Genetics and Genomic SciencesIcahn School of Medicine at Mount Sinai New York New York

2. Department of Population Health Science and PolicyIcahn School of Medicine at Mount Sinai New York New York

3. Department of Preventive Medicine and Community HealthUniversity of Texas Medical Branch Galveston Texas

4. Department of Medicine and Liver CenterUniversity of California San Francisco California

5. Department of MedicineUniversity of Alabama Birmingham Alabama

6. Department of Medicine (Section on Gastroenterology & Hepatology)Wake Forest NC Baptist Medical Center Winston‐Salem North Carolina

7. Department of Internal MedicineUniversity of Utah Salt Lake City Utah

Funder

National Institute of Diabetes and Digestive and Kidney Diseases

Publisher

Wiley

Subject

Biochemistry, Genetics and Molecular Biology (miscellaneous),Endocrinology, Diabetes and Metabolism,Internal Medicine

Link

https://onlinelibrary.wiley.com/doi/pdf/10.1002/jmd2.12052

Reference23 articles.

1. Erythropoietic protoporphyria

2. Porphyrin and heme metabolism and the porphyrias;Bonkovsky HL;Compr Physiol,2013

3. [43] Porphyrias: Photosensitivity and phototherapy

4. Erythropoietic protoporphyria in the U.K.: clinical features and effect on quality of life

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2. Observational pilot study of multi‐wavelength wearable light dosimetry for erythropoietic protoporphyria;International Journal of Dermatology;2024-04-11

3. Development and Content Validation of Novel Patient-Reported Outcome Measures to Assess Disease Severity and Change in Patients with Erythropoietic Protoporphyria: The EPP Impact Questionnaire (EPIQ);Patient Related Outcome Measures;2024-02

4. Update on the Porphyrias;Annual Review of Medicine;2024-01-29

5. Development and content validation of a sunlight exposure diary in patients with erythropoietic protoporphyria;Journal of Patient-Reported Outcomes;2023-11-20