Evidence map›Paper›PMID 34694434›Full record

ArticleClinical research in cardiology : official journal of the German Cardiac Society2022

Controlling my genome with my smartphone: first clinical experiences of the PROMISE system.

Ali Amr, Marc Hinderer, Lena Griebel, Dominic Deuber, Christoph Egger, Farbod Sedaghat-Hamedani, Elham Kayvanpour, Daniel Huhn, Jan Haas, Karen Frese and 12 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Clinical research in cardiology : official journal of the German Cardiac Society, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed.

  1. Article
  2. Review
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

22 authors.

Ali AmrInstitute for Cardiomyopathies, Department of Medicine III, University of Heidelberg, Im Neuenheimer Feld 410, 69120, Heidelberg, Germany.
Marc HindererChair of Medical Informatics, Friedrich Alexander University Erlangen-Nürnberg, 91058, Erlangen, Germany.
Lena GriebelChair of Medical Informatics, Friedrich Alexander University Erlangen-Nürnberg, 91058, Erlangen, Germany.
Dominic DeuberChair for Applied Cryptography, Friedrich-Alexander University Erlangen-Nürnberg, 90429, Erlangen, Germany.
Christoph EggerChair for Applied Cryptography, Friedrich-Alexander University Erlangen-Nürnberg, 90429, Erlangen, Germany.
Farbod Sedaghat-HamedaniInstitute for Cardiomyopathies, Department of Medicine III, University of Heidelberg, Im Neuenheimer Feld 410, 69120, Heidelberg, Germany.
Elham KayvanpourInstitute for Cardiomyopathies, Department of Medicine III, University of Heidelberg, Im Neuenheimer Feld 410, 69120, Heidelberg, Germany.
Daniel HuhnDepartment of General Internal Medicine and Psychosomatic, University Hospital Heidelberg, 69120, Heidelberg, Germany.
Jan HaasInstitute for Cardiomyopathies, Department of Medicine III, University of Heidelberg, Im Neuenheimer Feld 410, 69120, Heidelberg, Germany.
Karen FreseInstitute for Cardiomyopathies, Department of Medicine III, University of Heidelberg, Im Neuenheimer Feld 410, 69120, Heidelberg, Germany.
Marc SchweigBackes SRT GmbH, 66111, Saarbrücken, Germany.
Ninja MarnauCISPA Helmholtz Center for Information Security, 66123, Saarbrücken, Germany.
Annika KrämerChair for Information Security and Cryptography, Saarland University, 66123, Saarbrücken, Germany.
Claudia DurandCeGaT GmbH, Center for Genomics and Transcriptomics, 72076, Tübingen, Germany.
Florian BattkeCeGaT GmbH, Center for Genomics and Transcriptomics, 72076, Tübingen, Germany.
Hans-Ulrich ProkoschChair of Medical Informatics, Friedrich Alexander University Erlangen-Nürnberg, 91058, Erlangen, Germany.
Michael BackesCISPA Helmholtz Center for Information Security, 66123, Saarbrücken, Germany.
Andreas KellerChair for Clinical Bioinformatics, Saarland University, 66123, Saarbrücken, Germany.
Dominique SchröderChair for Applied Cryptography, Friedrich-Alexander University Erlangen-Nürnberg, 90429, Erlangen, Germany.
Hugo A KatusInstitute for Cardiomyopathies, Department of Medicine III, University of Heidelberg, Im Neuenheimer Feld 410, 69120, Heidelberg, Germany.
Norbert FreyInstitute for Cardiomyopathies, Department of Medicine III, University of Heidelberg, Im Neuenheimer Feld 410, 69120, Heidelberg, Germany.
Benjamin MederInstitute for Cardiomyopathies, Department of Medicine III, University of Heidelberg, Im Neuenheimer Feld 410, 69120, Heidelberg, Germany. benjamin.meder@med.uni-heidelberg.de.ORCID http://orcid.org/0000-0003-0741-2633

Funding

Bundesministerium für Bildung und Forschung 16KIS0364
6 · The paper itself

Abstract

backgroundThe development of Precision Medicine strategies requires high-dimensional phenotypic and genomic data, both of which are highly privacy-sensitive data types. Conventional data management systems lack the capabilities to sufficiently handle the expected large quantities of such sensitive data in a secure manner. PROMISE is a genetic data management concept that implements a highly secure platform for data exchange while preserving patient interests, privacy, and autonomy.

methodsThe concept of PROMISE to democratize genetic data was developed by an interdisciplinary team. It integrates a sophisticated cryptographic concept that allows only the patient to grant selective access to defined parts of his genetic information with single DNA base-pair resolution cryptography. The PROMISE system was developed for research purposes to evaluate the concept in a pilot study with nineteen cardiomyopathy patients undergoing genotyping, questionnaires, and longitudinal follow-up.

resultsThe safety of genetic data was very important to 79%, and patients generally regarded the data as highly sensitive. More than half the patients reported that their attitude towards the handling of genetic data has changed after using the PROMISE app for 4 months (median). The patients reported higher confidence in data security and willingness to share their data with commercial third parties, including pharmaceutical companies (increase from 5 to 32%).

conclusionPROMISE democratizes genomic data by a transparent, secure, and patient-centric approach. This clinical pilot study evaluating a genetic data infrastructure is unique and shows that patient's acceptance of data sharing can be increased by patient-centric decision-making.

Indexed as

Computer SecuritySmartphoneHumansInformation DisseminationPilot ProjectsPrivacyBig data democratizationData securityDigital healthGenetic data transferPrivacyWhole-genome sequencing

Identifiers

PMID34694434
PMCPMC9151530

What OpenQuestion holds

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Registered trials

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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.