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Publication

Evaluating the Patient-Reported Outcomes Measurement Information System scales in acute intermittent porphyria.

Hetanshi Naik | Jessica R Overbey | Guy H Montgomery | Gary Winkel | Manisha Balwani | Karl E Anderson | D Montgomery Bissell | Herbert L Bonkovsky | John D Phillips | Bruce Wang | Brendan McGuire | Siobán Keel | Cynthia Levy | Angelika Erwin | Robert J Desnick
Genetics in medicine : official journal of the American College of Medical Genetics | 2020

Acute intermittent porphyria (AIP) is a rare inborn error of heme biosynthesis characterized by life-threatening acute attacks. Few studies have assessed quality of life (QoL) in AIP and those that have had small sample sizes and used tools that may not have captured important domains.

Pubmed ID: 31690837

Research resources used in this publication

None found

Additional research tools detected in this publication

Antibodies used in this publication

None found

Associated grants

  • Agency: NCATS NIH HHS, United States
    Id: U2C TR002818
  • Agency: NIDDK NIH HHS, United States
    Id: U54 DK083909
  • Agency: NIDDK NIH HHS, United States
    Id: U54 DK110858
  • Agency: NCATS NIH HHS, United States
    Id: UL1 TR001420

Publication data is provided by the National Library of Medicine ® and PubMed ®. Data is retrieved from PubMed ® on a weekly schedule. For terms and conditions see the National Library of Medicine Terms and Conditions.

This is a list of tools and resources that we have found mentioned in this publication.

Patient-Reported Outcomes Measurement Information System (tool)

RRID:SCR_004718

Repository of person centered measures that evaluates and monitors physical, mental, and social health in adults and children.

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The PRECISE-TBI toolbox are a collection tools and resources to increase rigor and reproducibility with Traumatic Brain Injury within the PRE Clinical Interagency reSearch resourcE - Traumatic Brain Injury (PRECISE-TBI). Please learn more about PRECISE-TBI at https://www.precise-tbi.org

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