A Versatile and Scalable Platform That Streamlines Data Collection for Patient-Centered Studies: Usability and Feasibility Study Article Swipe
Haley Huang
,
Sofia Aschettino
,
Nasim Lari
,
Ting-Hsuan Lee
,
Sarah Stothers Rosenberg
,
Xinyi Ng
,
Stella G. Muthuri
,
Anirudh Bakshi
,
Korrin Bishop
,
Hussein Ezzeldin
·
YOU?
·
· 2022
· Open Access
·
· DOI: https://doi.org/10.2196/38579
YOU?
·
· 2022
· Open Access
·
· DOI: https://doi.org/10.2196/38579
Background The Food and Drug Administration Center for Biologics Evaluation and Research (CBER) established the Biologics Effectiveness and Safety (BEST) Initiative with several objectives, including the expansion and enhancement of CBER’s access to fit-for-purpose data sources, analytics, tools, and infrastructures to improve the understanding of patient experiences with conditions related to CBER-regulated products. Owing to existing challenges in data collection, especially for rare disease research, CBER recognized the need for a comprehensive platform where study coordinators can engage with study participants and design and deploy studies while patients or caregivers could enroll, consent, and securely participate as well. Objective This study aimed to increase awareness and describe the design, development, and novelty of the Survey of Health and Patient Experience (SHAPE) platform, its functionality and application, quality improvement efforts, open-source availability, and plans for enhancement. Methods SHAPE is hosted in a Google Cloud environment and comprises 3 parts: the administrator application, participant app, and application programming interface. The administrator can build a study comprising a set of questionnaires and self-report entries through the app. Once the study is deployed, the participant can access the app, consent to the study, and complete its components. To build SHAPE to be scalable and flexible, we leveraged the open-source software development kit, Ionic Framework. This enabled the building and deploying of apps across platforms, including iOS, Android, and progressive web applications, from a single codebase by using standardized web technologies. SHAPE has been integrated with a leading Health Level 7 (HL7®) Fast Healthcare Interoperability Resources (FHIR®) application programming interface platform, 1upHealth, which allows participants to consent to 1-time data pull of their electronic health records. We used an agile-based process that engaged multiple stakeholders in SHAPE’s design and development. Results SHAPE allows study coordinators to plan, develop, and deploy questionnaires to obtain important end points directly from patients or caregivers. Electronic health record integration enables access to patient health records, which can validate and enhance the accuracy of data-capture methods. The administrator can then download the study data into HL7® FHIR®–formatted JSON files. In this paper, we illustrate how study coordinators can use SHAPE to design patient-centered studies. We demonstrate its broad applicability through a hypothetical type 1 diabetes cohort study and an ongoing pilot study on metachromatic leukodystrophy to implement best practices for designing a regulatory-grade natural history study for rare diseases. Conclusions SHAPE is an intuitive and comprehensive data-collection tool for a variety of clinical studies. Further customization of this versatile and scalable platform allows for multiple use cases. SHAPE can capture patient perspectives and clinical data, thereby providing regulators, clinicians, researchers, and patient advocacy organizations with data to inform drug development and improve patient outcomes.
Related Topics
Concepts
Metadata
- Type
- article
- Language
- en
- Landing Page
- https://doi.org/10.2196/38579
- https://formative.jmir.org/2022/9/e38579/PDF
- OA Status
- gold
- Cited By
- 4
- References
- 20
- Related Works
- 10
- OpenAlex ID
- https://openalex.org/W4292258793
All OpenAlex metadata
Raw OpenAlex JSON
- OpenAlex ID
-
https://openalex.org/W4292258793Canonical identifier for this work in OpenAlex
- DOI
-
https://doi.org/10.2196/38579Digital Object Identifier
- Title
-
A Versatile and Scalable Platform That Streamlines Data Collection for Patient-Centered Studies: Usability and Feasibility StudyWork title
- Type
-
articleOpenAlex work type
- Language
-
enPrimary language
- Publication year
-
2022Year of publication
- Publication date
-
2022-08-17Full publication date if available
- Authors
-
Haley Huang, Sofia Aschettino, Nasim Lari, Ting-Hsuan Lee, Sarah Stothers Rosenberg, Xinyi Ng, Stella G. Muthuri, Anirudh Bakshi, Korrin Bishop, Hussein EzzeldinList of authors in order
- Landing page
-
https://doi.org/10.2196/38579Publisher landing page
- PDF URL
-
https://formative.jmir.org/2022/9/e38579/PDFDirect link to full text PDF
- Open access
-
YesWhether a free full text is available
- OA status
-
goldOpen access status per OpenAlex
- OA URL
-
https://formative.jmir.org/2022/9/e38579/PDFDirect OA link when available
- Concepts
-
Computer science, Usability, Cloud computing, Scalability, Health care, Best practice, Health informatics, World Wide Web, Medicine, Database, Human–computer interaction, Nursing, Economic growth, Management, Operating system, Public health, EconomicsTop concepts (fields/topics) attached by OpenAlex
- Cited by
-
4Total citation count in OpenAlex
- Citations by year (recent)
-
2024: 2, 2023: 2Per-year citation counts (last 5 years)
- References (count)
-
20Number of works referenced by this work
- Related works (count)
-
10Other works algorithmically related by OpenAlex
Full payload
| id | https://openalex.org/W4292258793 |
|---|---|
| doi | https://doi.org/10.2196/38579 |
| ids.doi | https://doi.org/10.2196/38579 |
| ids.pmid | https://pubmed.ncbi.nlm.nih.gov/36103218 |
| ids.openalex | https://openalex.org/W4292258793 |
| fwci | 1.01936079 |
| type | article |
| title | A Versatile and Scalable Platform That Streamlines Data Collection for Patient-Centered Studies: Usability and Feasibility Study |
| biblio.issue | 9 |
| biblio.volume | 6 |
| biblio.last_page | e38579 |
| biblio.first_page | e38579 |
| topics[0].id | https://openalex.org/T11642 |
| topics[0].field.id | https://openalex.org/fields/13 |
| topics[0].field.display_name | Biochemistry, Genetics and Molecular Biology |
| topics[0].score | 0.9904999732971191 |
| topics[0].domain.id | https://openalex.org/domains/1 |
| topics[0].domain.display_name | Life Sciences |
| topics[0].subfield.id | https://openalex.org/subfields/1311 |
| topics[0].subfield.display_name | Genetics |
| topics[0].display_name | Genomics and Rare Diseases |
| topics[1].id | https://openalex.org/T10665 |
| topics[1].field.id | https://openalex.org/fields/27 |
| topics[1].field.display_name | Medicine |
| topics[1].score | 0.9757000207901001 |
| topics[1].domain.id | https://openalex.org/domains/4 |
| topics[1].domain.display_name | Health Sciences |
| topics[1].subfield.id | https://openalex.org/subfields/2740 |
| topics[1].subfield.display_name | Pulmonary and Respiratory Medicine |
| topics[1].display_name | Cystic Fibrosis Research Advances |
| topics[2].id | https://openalex.org/T10769 |
| topics[2].field.id | https://openalex.org/fields/13 |
| topics[2].field.display_name | Biochemistry, Genetics and Molecular Biology |
| topics[2].score | 0.9742000102996826 |
| topics[2].domain.id | https://openalex.org/domains/1 |
| topics[2].domain.display_name | Life Sciences |
| topics[2].subfield.id | https://openalex.org/subfields/1311 |
| topics[2].subfield.display_name | Genetics |
| topics[2].display_name | BRCA gene mutations in cancer |
| is_xpac | False |
| apc_list.value | 1900 |
| apc_list.currency | USD |
| apc_list.value_usd | 1900 |
| apc_paid.value | 1900 |
| apc_paid.currency | USD |
| apc_paid.value_usd | 1900 |
| concepts[0].id | https://openalex.org/C41008148 |
| concepts[0].level | 0 |
| concepts[0].score | 0.6396237015724182 |
| concepts[0].wikidata | https://www.wikidata.org/wiki/Q21198 |
| concepts[0].display_name | Computer science |
| concepts[1].id | https://openalex.org/C170130773 |
| concepts[1].level | 2 |
| concepts[1].score | 0.608608603477478 |
| concepts[1].wikidata | https://www.wikidata.org/wiki/Q216378 |
| concepts[1].display_name | Usability |
| concepts[2].id | https://openalex.org/C79974875 |
| concepts[2].level | 2 |
| concepts[2].score | 0.4320336580276489 |
| concepts[2].wikidata | https://www.wikidata.org/wiki/Q483639 |
| concepts[2].display_name | Cloud computing |
| concepts[3].id | https://openalex.org/C48044578 |
| concepts[3].level | 2 |
| concepts[3].score | 0.4309573173522949 |
| concepts[3].wikidata | https://www.wikidata.org/wiki/Q727490 |
| concepts[3].display_name | Scalability |
| concepts[4].id | https://openalex.org/C160735492 |
| concepts[4].level | 2 |
| concepts[4].score | 0.4261245131492615 |
| concepts[4].wikidata | https://www.wikidata.org/wiki/Q31207 |
| concepts[4].display_name | Health care |
| concepts[5].id | https://openalex.org/C184356942 |
| concepts[5].level | 2 |
| concepts[5].score | 0.42011719942092896 |
| concepts[5].wikidata | https://www.wikidata.org/wiki/Q830382 |
| concepts[5].display_name | Best practice |
| concepts[6].id | https://openalex.org/C145642194 |
| concepts[6].level | 3 |
| concepts[6].score | 0.4103314280509949 |
| concepts[6].wikidata | https://www.wikidata.org/wiki/Q870895 |
| concepts[6].display_name | Health informatics |
| concepts[7].id | https://openalex.org/C136764020 |
| concepts[7].level | 1 |
| concepts[7].score | 0.390302449464798 |
| concepts[7].wikidata | https://www.wikidata.org/wiki/Q466 |
| concepts[7].display_name | World Wide Web |
| concepts[8].id | https://openalex.org/C71924100 |
| concepts[8].level | 0 |
| concepts[8].score | 0.3690618872642517 |
| concepts[8].wikidata | https://www.wikidata.org/wiki/Q11190 |
| concepts[8].display_name | Medicine |
| concepts[9].id | https://openalex.org/C77088390 |
| concepts[9].level | 1 |
| concepts[9].score | 0.1849711537361145 |
| concepts[9].wikidata | https://www.wikidata.org/wiki/Q8513 |
| concepts[9].display_name | Database |
| concepts[10].id | https://openalex.org/C107457646 |
| concepts[10].level | 1 |
| concepts[10].score | 0.16934174299240112 |
| concepts[10].wikidata | https://www.wikidata.org/wiki/Q207434 |
| concepts[10].display_name | Human–computer interaction |
| concepts[11].id | https://openalex.org/C159110408 |
| concepts[11].level | 1 |
| concepts[11].score | 0.12543392181396484 |
| concepts[11].wikidata | https://www.wikidata.org/wiki/Q121176 |
| concepts[11].display_name | Nursing |
| concepts[12].id | https://openalex.org/C50522688 |
| concepts[12].level | 1 |
| concepts[12].score | 0.0 |
| concepts[12].wikidata | https://www.wikidata.org/wiki/Q189833 |
| concepts[12].display_name | Economic growth |
| concepts[13].id | https://openalex.org/C187736073 |
| concepts[13].level | 1 |
| concepts[13].score | 0.0 |
| concepts[13].wikidata | https://www.wikidata.org/wiki/Q2920921 |
| concepts[13].display_name | Management |
| concepts[14].id | https://openalex.org/C111919701 |
| concepts[14].level | 1 |
| concepts[14].score | 0.0 |
| concepts[14].wikidata | https://www.wikidata.org/wiki/Q9135 |
| concepts[14].display_name | Operating system |
| concepts[15].id | https://openalex.org/C138816342 |
| concepts[15].level | 2 |
| concepts[15].score | 0.0 |
| concepts[15].wikidata | https://www.wikidata.org/wiki/Q189603 |
| concepts[15].display_name | Public health |
| concepts[16].id | https://openalex.org/C162324750 |
| concepts[16].level | 0 |
| concepts[16].score | 0.0 |
| concepts[16].wikidata | https://www.wikidata.org/wiki/Q8134 |
| concepts[16].display_name | Economics |
| keywords[0].id | https://openalex.org/keywords/computer-science |
| keywords[0].score | 0.6396237015724182 |
| keywords[0].display_name | Computer science |
| keywords[1].id | https://openalex.org/keywords/usability |
| keywords[1].score | 0.608608603477478 |
| keywords[1].display_name | Usability |
| keywords[2].id | https://openalex.org/keywords/cloud-computing |
| keywords[2].score | 0.4320336580276489 |
| keywords[2].display_name | Cloud computing |
| keywords[3].id | https://openalex.org/keywords/scalability |
| keywords[3].score | 0.4309573173522949 |
| keywords[3].display_name | Scalability |
| keywords[4].id | https://openalex.org/keywords/health-care |
| keywords[4].score | 0.4261245131492615 |
| keywords[4].display_name | Health care |
| keywords[5].id | https://openalex.org/keywords/best-practice |
| keywords[5].score | 0.42011719942092896 |
| keywords[5].display_name | Best practice |
| keywords[6].id | https://openalex.org/keywords/health-informatics |
| keywords[6].score | 0.4103314280509949 |
| keywords[6].display_name | Health informatics |
| keywords[7].id | https://openalex.org/keywords/world-wide-web |
| keywords[7].score | 0.390302449464798 |
| keywords[7].display_name | World Wide Web |
| keywords[8].id | https://openalex.org/keywords/medicine |
| keywords[8].score | 0.3690618872642517 |
| keywords[8].display_name | Medicine |
| keywords[9].id | https://openalex.org/keywords/database |
| keywords[9].score | 0.1849711537361145 |
| keywords[9].display_name | Database |
| keywords[10].id | https://openalex.org/keywords/human–computer-interaction |
| keywords[10].score | 0.16934174299240112 |
| keywords[10].display_name | Human–computer interaction |
| keywords[11].id | https://openalex.org/keywords/nursing |
| keywords[11].score | 0.12543392181396484 |
| keywords[11].display_name | Nursing |
| language | en |
| locations[0].id | doi:10.2196/38579 |
| locations[0].is_oa | True |
| locations[0].source.id | https://openalex.org/S4210234749 |
| locations[0].source.issn | 2561-326X |
| locations[0].source.type | journal |
| locations[0].source.is_oa | True |
| locations[0].source.issn_l | 2561-326X |
| locations[0].source.is_core | True |
| locations[0].source.is_in_doaj | True |
| locations[0].source.display_name | JMIR Formative Research |
| locations[0].source.host_organization | |
| locations[0].source.host_organization_name | |
| locations[0].license | cc-by |
| locations[0].pdf_url | https://formative.jmir.org/2022/9/e38579/PDF |
| locations[0].version | publishedVersion |
| locations[0].raw_type | journal-article |
| locations[0].license_id | https://openalex.org/licenses/cc-by |
| locations[0].is_accepted | True |
| locations[0].is_published | True |
| locations[0].raw_source_name | JMIR Formative Research |
| locations[0].landing_page_url | https://doi.org/10.2196/38579 |
| locations[1].id | pmid:36103218 |
| locations[1].is_oa | False |
| locations[1].source.id | https://openalex.org/S4306525036 |
| locations[1].source.issn | |
| locations[1].source.type | repository |
| locations[1].source.is_oa | False |
| locations[1].source.issn_l | |
| locations[1].source.is_core | False |
| locations[1].source.is_in_doaj | False |
| locations[1].source.display_name | PubMed |
| locations[1].source.host_organization | https://openalex.org/I1299303238 |
| locations[1].source.host_organization_name | National Institutes of Health |
| locations[1].source.host_organization_lineage | https://openalex.org/I1299303238 |
| locations[1].license | |
| locations[1].pdf_url | |
| locations[1].version | publishedVersion |
| locations[1].raw_type | |
| locations[1].license_id | |
| locations[1].is_accepted | True |
| locations[1].is_published | True |
| locations[1].raw_source_name | JMIR formative research |
| locations[1].landing_page_url | https://pubmed.ncbi.nlm.nih.gov/36103218 |
| locations[2].id | pmh:oai:doaj.org/article:8eec038205234224bf051eaf0e0247c1 |
| locations[2].is_oa | False |
| locations[2].source.id | https://openalex.org/S4306401280 |
| locations[2].source.issn | |
| locations[2].source.type | repository |
| locations[2].source.is_oa | False |
| locations[2].source.issn_l | |
| locations[2].source.is_core | False |
| locations[2].source.is_in_doaj | False |
| locations[2].source.display_name | DOAJ (DOAJ: Directory of Open Access Journals) |
| locations[2].source.host_organization | |
| locations[2].source.host_organization_name | |
| locations[2].license | |
| locations[2].pdf_url | |
| locations[2].version | submittedVersion |
| locations[2].raw_type | article |
| locations[2].license_id | |
| locations[2].is_accepted | False |
| locations[2].is_published | False |
| locations[2].raw_source_name | JMIR Formative Research, Vol 6, Iss 9, p e38579 (2022) |
| locations[2].landing_page_url | https://doaj.org/article/8eec038205234224bf051eaf0e0247c1 |
| locations[3].id | pmh:oai:pubmedcentral.nih.gov:9520400 |
| locations[3].is_oa | True |
| locations[3].source.id | https://openalex.org/S2764455111 |
| locations[3].source.issn | |
| locations[3].source.type | repository |
| locations[3].source.is_oa | False |
| locations[3].source.issn_l | |
| locations[3].source.is_core | False |
| locations[3].source.is_in_doaj | False |
| locations[3].source.display_name | PubMed Central |
| locations[3].source.host_organization | https://openalex.org/I1299303238 |
| locations[3].source.host_organization_name | National Institutes of Health |
| locations[3].source.host_organization_lineage | https://openalex.org/I1299303238 |
| locations[3].license | other-oa |
| locations[3].pdf_url | |
| locations[3].version | submittedVersion |
| locations[3].raw_type | Text |
| locations[3].license_id | https://openalex.org/licenses/other-oa |
| locations[3].is_accepted | False |
| locations[3].is_published | False |
| locations[3].raw_source_name | JMIR Form Res |
| locations[3].landing_page_url | https://www.ncbi.nlm.nih.gov/pmc/articles/9520400 |
| indexed_in | crossref, doaj, pubmed |
| authorships[0].author.id | https://openalex.org/A5032810460 |
| authorships[0].author.orcid | https://orcid.org/0000-0002-1502-7973 |
| authorships[0].author.display_name | Haley Huang |
| authorships[0].countries | US |
| authorships[0].affiliations[0].institution_ids | https://openalex.org/I1341412227 |
| authorships[0].affiliations[0].raw_affiliation_string | IBM Consulting, IBM, Bethesda, MD, United States |
| authorships[0].institutions[0].id | https://openalex.org/I1341412227 |
| authorships[0].institutions[0].ror | https://ror.org/05hh8d621 |
| authorships[0].institutions[0].type | company |
| authorships[0].institutions[0].lineage | https://openalex.org/I1341412227 |
| authorships[0].institutions[0].country_code | US |
| authorships[0].institutions[0].display_name | IBM (United States) |
| authorships[0].author_position | first |
| authorships[0].raw_author_name | Haley Huang |
| authorships[0].is_corresponding | False |
| authorships[0].raw_affiliation_strings | IBM Consulting, IBM, Bethesda, MD, United States |
| authorships[1].author.id | https://openalex.org/A5091488864 |
| authorships[1].author.orcid | https://orcid.org/0000-0002-1324-0308 |
| authorships[1].author.display_name | Sofia Aschettino |
| authorships[1].countries | US |
| authorships[1].affiliations[0].institution_ids | https://openalex.org/I1341412227 |
| authorships[1].affiliations[0].raw_affiliation_string | IBM Consulting, IBM, Bethesda, MD, United States |
| authorships[1].institutions[0].id | https://openalex.org/I1341412227 |
| authorships[1].institutions[0].ror | https://ror.org/05hh8d621 |
| authorships[1].institutions[0].type | company |
| authorships[1].institutions[0].lineage | https://openalex.org/I1341412227 |
| authorships[1].institutions[0].country_code | US |
| authorships[1].institutions[0].display_name | IBM (United States) |
| authorships[1].author_position | middle |
| authorships[1].raw_author_name | Sofia Aschettino |
| authorships[1].is_corresponding | False |
| authorships[1].raw_affiliation_strings | IBM Consulting, IBM, Bethesda, MD, United States |
| authorships[2].author.id | https://openalex.org/A5034044747 |
| authorships[2].author.orcid | https://orcid.org/0000-0001-7596-4021 |
| authorships[2].author.display_name | Nasim Lari |
| authorships[2].countries | US |
| authorships[2].affiliations[0].institution_ids | https://openalex.org/I1341412227 |
| authorships[2].affiliations[0].raw_affiliation_string | IBM Consulting, IBM, Bethesda, MD, United States |
| authorships[2].institutions[0].id | https://openalex.org/I1341412227 |
| authorships[2].institutions[0].ror | https://ror.org/05hh8d621 |
| authorships[2].institutions[0].type | company |
| authorships[2].institutions[0].lineage | https://openalex.org/I1341412227 |
| authorships[2].institutions[0].country_code | US |
| authorships[2].institutions[0].display_name | IBM (United States) |
| authorships[2].author_position | middle |
| authorships[2].raw_author_name | Nasim Lari |
| authorships[2].is_corresponding | False |
| authorships[2].raw_affiliation_strings | IBM Consulting, IBM, Bethesda, MD, United States |
| authorships[3].author.id | https://openalex.org/A5045820110 |
| authorships[3].author.orcid | https://orcid.org/0000-0001-5682-8497 |
| authorships[3].author.display_name | Ting-Hsuan Lee |
| authorships[3].countries | US |
| authorships[3].affiliations[0].institution_ids | https://openalex.org/I1318287680, https://openalex.org/I1320320070 |
| authorships[3].affiliations[0].raw_affiliation_string | Center for Biologics Evaluation and Research, United States Food and Drug Administration, Silver Spring, MD, United States |
| authorships[3].institutions[0].id | https://openalex.org/I1318287680 |
| authorships[3].institutions[0].ror | https://ror.org/02nr3fr97 |
| authorships[3].institutions[0].type | facility |
| authorships[3].institutions[0].lineage | https://openalex.org/I1299022934, https://openalex.org/I1318287680, https://openalex.org/I1320320070 |
| authorships[3].institutions[0].country_code | US |
| authorships[3].institutions[0].display_name | Center for Biologics Evaluation and Research |
| authorships[3].institutions[1].id | https://openalex.org/I1320320070 |
| authorships[3].institutions[1].ror | https://ror.org/034xvzb47 |
| authorships[3].institutions[1].type | government |
| authorships[3].institutions[1].lineage | https://openalex.org/I1299022934, https://openalex.org/I1320320070 |
| authorships[3].institutions[1].country_code | US |
| authorships[3].institutions[1].display_name | United States Food and Drug Administration |
| authorships[3].author_position | middle |
| authorships[3].raw_author_name | Ting-Hsuan Lee |
| authorships[3].is_corresponding | False |
| authorships[3].raw_affiliation_strings | Center for Biologics Evaluation and Research, United States Food and Drug Administration, Silver Spring, MD, United States |
| authorships[4].author.id | https://openalex.org/A5082544263 |
| authorships[4].author.orcid | https://orcid.org/0000-0002-7788-8381 |
| authorships[4].author.display_name | Sarah Stothers Rosenberg |
| authorships[4].countries | US |
| authorships[4].affiliations[0].institution_ids | https://openalex.org/I1318287680, https://openalex.org/I1320320070 |
| authorships[4].affiliations[0].raw_affiliation_string | Center for Biologics Evaluation and Research, United States Food and Drug Administration, Silver Spring, MD, United States |
| authorships[4].institutions[0].id | https://openalex.org/I1318287680 |
| authorships[4].institutions[0].ror | https://ror.org/02nr3fr97 |
| authorships[4].institutions[0].type | facility |
| authorships[4].institutions[0].lineage | https://openalex.org/I1299022934, https://openalex.org/I1318287680, https://openalex.org/I1320320070 |
| authorships[4].institutions[0].country_code | US |
| authorships[4].institutions[0].display_name | Center for Biologics Evaluation and Research |
| authorships[4].institutions[1].id | https://openalex.org/I1320320070 |
| authorships[4].institutions[1].ror | https://ror.org/034xvzb47 |
| authorships[4].institutions[1].type | government |
| authorships[4].institutions[1].lineage | https://openalex.org/I1299022934, https://openalex.org/I1320320070 |
| authorships[4].institutions[1].country_code | US |
| authorships[4].institutions[1].display_name | United States Food and Drug Administration |
| authorships[4].author_position | middle |
| authorships[4].raw_author_name | Sarah Stothers Rosenberg |
| authorships[4].is_corresponding | False |
| authorships[4].raw_affiliation_strings | Center for Biologics Evaluation and Research, United States Food and Drug Administration, Silver Spring, MD, United States |
| authorships[5].author.id | https://openalex.org/A5044132384 |
| authorships[5].author.orcid | https://orcid.org/0000-0002-0736-8276 |
| authorships[5].author.display_name | Xinyi Ng |
| authorships[5].countries | US |
| authorships[5].affiliations[0].institution_ids | https://openalex.org/I1318287680, https://openalex.org/I1320320070 |
| authorships[5].affiliations[0].raw_affiliation_string | Center for Biologics Evaluation and Research United States Food and Drug Administration 10903 New Hampshire Avenue Silver Spring, MD, 20993 United States |
| authorships[5].institutions[0].id | https://openalex.org/I1318287680 |
| authorships[5].institutions[0].ror | https://ror.org/02nr3fr97 |
| authorships[5].institutions[0].type | facility |
| authorships[5].institutions[0].lineage | https://openalex.org/I1299022934, https://openalex.org/I1318287680, https://openalex.org/I1320320070 |
| authorships[5].institutions[0].country_code | US |
| authorships[5].institutions[0].display_name | Center for Biologics Evaluation and Research |
| authorships[5].institutions[1].id | https://openalex.org/I1320320070 |
| authorships[5].institutions[1].ror | https://ror.org/034xvzb47 |
| authorships[5].institutions[1].type | government |
| authorships[5].institutions[1].lineage | https://openalex.org/I1299022934, https://openalex.org/I1320320070 |
| authorships[5].institutions[1].country_code | US |
| authorships[5].institutions[1].display_name | United States Food and Drug Administration |
| authorships[5].author_position | middle |
| authorships[5].raw_author_name | Xinyi Ng |
| authorships[5].is_corresponding | False |
| authorships[5].raw_affiliation_strings | Center for Biologics Evaluation and Research United States Food and Drug Administration 10903 New Hampshire Avenue Silver Spring, MD, 20993 United States |
| authorships[6].author.id | https://openalex.org/A5086322259 |
| authorships[6].author.orcid | https://orcid.org/0000-0003-0987-7450 |
| authorships[6].author.display_name | Stella G. Muthuri |
| authorships[6].countries | US |
| authorships[6].affiliations[0].institution_ids | https://openalex.org/I1341412227 |
| authorships[6].affiliations[0].raw_affiliation_string | IBM Consulting, IBM, Bethesda, MD, United States |
| authorships[6].affiliations[1].institution_ids | https://openalex.org/I1318287680, https://openalex.org/I1320320070 |
| authorships[6].affiliations[1].raw_affiliation_string | Center for Biologics Evaluation and Research, United States Food and Drug Administration, Silver Spring, MD, United States |
| authorships[6].institutions[0].id | https://openalex.org/I1318287680 |
| authorships[6].institutions[0].ror | https://ror.org/02nr3fr97 |
| authorships[6].institutions[0].type | facility |
| authorships[6].institutions[0].lineage | https://openalex.org/I1299022934, https://openalex.org/I1318287680, https://openalex.org/I1320320070 |
| authorships[6].institutions[0].country_code | US |
| authorships[6].institutions[0].display_name | Center for Biologics Evaluation and Research |
| authorships[6].institutions[1].id | https://openalex.org/I1341412227 |
| authorships[6].institutions[1].ror | https://ror.org/05hh8d621 |
| authorships[6].institutions[1].type | company |
| authorships[6].institutions[1].lineage | https://openalex.org/I1341412227 |
| authorships[6].institutions[1].country_code | US |
| authorships[6].institutions[1].display_name | IBM (United States) |
| authorships[6].institutions[2].id | https://openalex.org/I1320320070 |
| authorships[6].institutions[2].ror | https://ror.org/034xvzb47 |
| authorships[6].institutions[2].type | government |
| authorships[6].institutions[2].lineage | https://openalex.org/I1299022934, https://openalex.org/I1320320070 |
| authorships[6].institutions[2].country_code | US |
| authorships[6].institutions[2].display_name | United States Food and Drug Administration |
| authorships[6].author_position | middle |
| authorships[6].raw_author_name | Stella Muthuri |
| authorships[6].is_corresponding | False |
| authorships[6].raw_affiliation_strings | Center for Biologics Evaluation and Research, United States Food and Drug Administration, Silver Spring, MD, United States, IBM Consulting, IBM, Bethesda, MD, United States |
| authorships[7].author.id | https://openalex.org/A5013050046 |
| authorships[7].author.orcid | https://orcid.org/0000-0001-8581-8650 |
| authorships[7].author.display_name | Anirudh Bakshi |
| authorships[7].affiliations[0].raw_affiliation_string | Gevity Consulting Inc., Accenture, Ottawa, ON, Canada |
| authorships[7].author_position | middle |
| authorships[7].raw_author_name | Anirudh Bakshi |
| authorships[7].is_corresponding | False |
| authorships[7].raw_affiliation_strings | Gevity Consulting Inc., Accenture, Ottawa, ON, Canada |
| authorships[8].author.id | https://openalex.org/A5034108537 |
| authorships[8].author.orcid | https://orcid.org/0000-0002-7833-4030 |
| authorships[8].author.display_name | Korrin Bishop |
| authorships[8].countries | US |
| authorships[8].affiliations[0].institution_ids | https://openalex.org/I4210159451 |
| authorships[8].affiliations[0].raw_affiliation_string | Korrin Bishop Writing & Editing, Kodak, TN, United States |
| authorships[8].institutions[0].id | https://openalex.org/I4210159451 |
| authorships[8].institutions[0].ror | https://ror.org/04rn3ph18 |
| authorships[8].institutions[0].type | company |
| authorships[8].institutions[0].lineage | https://openalex.org/I4210159451 |
| authorships[8].institutions[0].country_code | US |
| authorships[8].institutions[0].display_name | Kodak (United States) |
| authorships[8].author_position | middle |
| authorships[8].raw_author_name | Korrin Bishop |
| authorships[8].is_corresponding | False |
| authorships[8].raw_affiliation_strings | Korrin Bishop Writing & Editing, Kodak, TN, United States |
| authorships[9].author.id | https://openalex.org/A5001244005 |
| authorships[9].author.orcid | https://orcid.org/0000-0001-7375-6456 |
| authorships[9].author.display_name | Hussein Ezzeldin |
| authorships[9].countries | US |
| authorships[9].affiliations[0].institution_ids | https://openalex.org/I1318287680, https://openalex.org/I1320320070 |
| authorships[9].affiliations[0].raw_affiliation_string | Center for Biologics Evaluation and Research, United States Food and Drug Administration, Silver Spring, MD, United States |
| authorships[9].institutions[0].id | https://openalex.org/I1318287680 |
| authorships[9].institutions[0].ror | https://ror.org/02nr3fr97 |
| authorships[9].institutions[0].type | facility |
| authorships[9].institutions[0].lineage | https://openalex.org/I1299022934, https://openalex.org/I1318287680, https://openalex.org/I1320320070 |
| authorships[9].institutions[0].country_code | US |
| authorships[9].institutions[0].display_name | Center for Biologics Evaluation and Research |
| authorships[9].institutions[1].id | https://openalex.org/I1320320070 |
| authorships[9].institutions[1].ror | https://ror.org/034xvzb47 |
| authorships[9].institutions[1].type | government |
| authorships[9].institutions[1].lineage | https://openalex.org/I1299022934, https://openalex.org/I1320320070 |
| authorships[9].institutions[1].country_code | US |
| authorships[9].institutions[1].display_name | United States Food and Drug Administration |
| authorships[9].author_position | last |
| authorships[9].raw_author_name | Hussein Ezzeldin |
| authorships[9].is_corresponding | True |
| authorships[9].raw_affiliation_strings | Center for Biologics Evaluation and Research, United States Food and Drug Administration, Silver Spring, MD, United States |
| has_content.pdf | True |
| has_content.grobid_xml | True |
| is_paratext | False |
| open_access.is_oa | True |
| open_access.oa_url | https://formative.jmir.org/2022/9/e38579/PDF |
| open_access.oa_status | gold |
| open_access.any_repository_has_fulltext | False |
| created_date | 2025-10-10T00:00:00 |
| display_name | A Versatile and Scalable Platform That Streamlines Data Collection for Patient-Centered Studies: Usability and Feasibility Study |
| has_fulltext | True |
| is_retracted | False |
| updated_date | 2025-11-06T03:46:38.306776 |
| primary_topic.id | https://openalex.org/T11642 |
| primary_topic.field.id | https://openalex.org/fields/13 |
| primary_topic.field.display_name | Biochemistry, Genetics and Molecular Biology |
| primary_topic.score | 0.9904999732971191 |
| primary_topic.domain.id | https://openalex.org/domains/1 |
| primary_topic.domain.display_name | Life Sciences |
| primary_topic.subfield.id | https://openalex.org/subfields/1311 |
| primary_topic.subfield.display_name | Genetics |
| primary_topic.display_name | Genomics and Rare Diseases |
| related_works | https://openalex.org/W2899084033, https://openalex.org/W2748952813, https://openalex.org/W2593692294, https://openalex.org/W2291678262, https://openalex.org/W2383532021, https://openalex.org/W2364921833, https://openalex.org/W1770504724, https://openalex.org/W4250588917, https://openalex.org/W2131644003, https://openalex.org/W2302028273 |
| cited_by_count | 4 |
| counts_by_year[0].year | 2024 |
| counts_by_year[0].cited_by_count | 2 |
| counts_by_year[1].year | 2023 |
| counts_by_year[1].cited_by_count | 2 |
| locations_count | 4 |
| best_oa_location.id | doi:10.2196/38579 |
| best_oa_location.is_oa | True |
| best_oa_location.source.id | https://openalex.org/S4210234749 |
| best_oa_location.source.issn | 2561-326X |
| best_oa_location.source.type | journal |
| best_oa_location.source.is_oa | True |
| best_oa_location.source.issn_l | 2561-326X |
| best_oa_location.source.is_core | True |
| best_oa_location.source.is_in_doaj | True |
| best_oa_location.source.display_name | JMIR Formative Research |
| best_oa_location.source.host_organization | |
| best_oa_location.source.host_organization_name | |
| best_oa_location.license | cc-by |
| best_oa_location.pdf_url | https://formative.jmir.org/2022/9/e38579/PDF |
| best_oa_location.version | publishedVersion |
| best_oa_location.raw_type | journal-article |
| best_oa_location.license_id | https://openalex.org/licenses/cc-by |
| best_oa_location.is_accepted | True |
| best_oa_location.is_published | True |
| best_oa_location.raw_source_name | JMIR Formative Research |
| best_oa_location.landing_page_url | https://doi.org/10.2196/38579 |
| primary_location.id | doi:10.2196/38579 |
| primary_location.is_oa | True |
| primary_location.source.id | https://openalex.org/S4210234749 |
| primary_location.source.issn | 2561-326X |
| primary_location.source.type | journal |
| primary_location.source.is_oa | True |
| primary_location.source.issn_l | 2561-326X |
| primary_location.source.is_core | True |
| primary_location.source.is_in_doaj | True |
| primary_location.source.display_name | JMIR Formative Research |
| primary_location.source.host_organization | |
| primary_location.source.host_organization_name | |
| primary_location.license | cc-by |
| primary_location.pdf_url | https://formative.jmir.org/2022/9/e38579/PDF |
| primary_location.version | publishedVersion |
| primary_location.raw_type | journal-article |
| primary_location.license_id | https://openalex.org/licenses/cc-by |
| primary_location.is_accepted | True |
| primary_location.is_published | True |
| primary_location.raw_source_name | JMIR Formative Research |
| primary_location.landing_page_url | https://doi.org/10.2196/38579 |
| publication_date | 2022-08-17 |
| publication_year | 2022 |
| referenced_works | https://openalex.org/W2082585121, https://openalex.org/W2310856158, https://openalex.org/W2000201884, https://openalex.org/W2796659008, https://openalex.org/W2132265655, https://openalex.org/W2023924430, https://openalex.org/W2102951373, https://openalex.org/W2296350496, https://openalex.org/W2804882164, https://openalex.org/W2595012400, https://openalex.org/W2882327091, https://openalex.org/W2806811344, https://openalex.org/W2952366051, https://openalex.org/W2588904304, https://openalex.org/W2933876793, https://openalex.org/W2972133305, https://openalex.org/W2592440681, https://openalex.org/W2783284840, https://openalex.org/W3113016715, https://openalex.org/W2751358454 |
| referenced_works_count | 20 |
| abstract_inverted_index.1 | 363 |
| abstract_inverted_index.3 | 146 |
| abstract_inverted_index.7 | 245 |
| abstract_inverted_index.a | 70, 140, 161, 164, 228, 241, 360, 381, 399 |
| abstract_inverted_index.In | 339 |
| abstract_inverted_index.To | 193 |
| abstract_inverted_index.We | 271, 354 |
| abstract_inverted_index.an | 273, 368, 392 |
| abstract_inverted_index.as | 96 |
| abstract_inverted_index.be | 197 |
| abstract_inverted_index.by | 231 |
| abstract_inverted_index.in | 57, 139, 280 |
| abstract_inverted_index.is | 137, 177, 391 |
| abstract_inverted_index.of | 29, 44, 112, 115, 166, 216, 266, 323, 401, 406 |
| abstract_inverted_index.on | 372 |
| abstract_inverted_index.or | 88, 304 |
| abstract_inverted_index.to | 32, 40, 50, 54, 102, 186, 196, 260, 262, 290, 296, 312, 350, 375, 436 |
| abstract_inverted_index.we | 201, 342 |
| abstract_inverted_index.The | 1, 157, 326 |
| abstract_inverted_index.and | 3, 10, 17, 27, 38, 81, 83, 93, 105, 110, 117, 124, 131, 144, 153, 168, 189, 199, 214, 223, 283, 293, 319, 367, 394, 409, 422, 430, 440 |
| abstract_inverted_index.can | 76, 159, 181, 317, 328, 347, 418 |
| abstract_inverted_index.end | 299 |
| abstract_inverted_index.for | 7, 61, 69, 133, 379, 386, 398, 413 |
| abstract_inverted_index.has | 237 |
| abstract_inverted_index.how | 344 |
| abstract_inverted_index.its | 122, 191, 356 |
| abstract_inverted_index.set | 165 |
| abstract_inverted_index.the | 14, 25, 42, 67, 107, 113, 148, 172, 175, 179, 183, 187, 203, 212, 321, 331 |
| abstract_inverted_index.use | 348, 415 |
| abstract_inverted_index.web | 225, 234 |
| abstract_inverted_index.CBER | 65 |
| abstract_inverted_index.Drug | 4 |
| abstract_inverted_index.Fast | 247 |
| abstract_inverted_index.Food | 2 |
| abstract_inverted_index.JSON | 337 |
| abstract_inverted_index.Once | 174 |
| abstract_inverted_index.This | 99, 210 |
| abstract_inverted_index.app, | 152, 184 |
| abstract_inverted_index.app. | 173 |
| abstract_inverted_index.apps | 217 |
| abstract_inverted_index.been | 238 |
| abstract_inverted_index.best | 377 |
| abstract_inverted_index.data | 34, 58, 264, 333, 435 |
| abstract_inverted_index.drug | 438 |
| abstract_inverted_index.from | 227, 302 |
| abstract_inverted_index.iOS, | 221 |
| abstract_inverted_index.into | 334 |
| abstract_inverted_index.kit, | 207 |
| abstract_inverted_index.need | 68 |
| abstract_inverted_index.pull | 265 |
| abstract_inverted_index.rare | 62, 387 |
| abstract_inverted_index.that | 276 |
| abstract_inverted_index.then | 329 |
| abstract_inverted_index.this | 340, 407 |
| abstract_inverted_index.tool | 397 |
| abstract_inverted_index.type | 362 |
| abstract_inverted_index.used | 272 |
| abstract_inverted_index.with | 21, 47, 78, 240, 434 |
| abstract_inverted_index.Cloud | 142 |
| abstract_inverted_index.HL7® | 335 |
| abstract_inverted_index.Ionic | 208 |
| abstract_inverted_index.Level | 244 |
| abstract_inverted_index.Owing | 53 |
| abstract_inverted_index.SHAPE | 136, 195, 236, 286, 349, 390, 417 |
| abstract_inverted_index.aimed | 101 |
| abstract_inverted_index.broad | 357 |
| abstract_inverted_index.build | 160, 194 |
| abstract_inverted_index.could | 90 |
| abstract_inverted_index.data, | 424 |
| abstract_inverted_index.pilot | 370 |
| abstract_inverted_index.plan, | 291 |
| abstract_inverted_index.plans | 132 |
| abstract_inverted_index.study | 74, 79, 100, 162, 176, 288, 332, 345, 366, 371, 385 |
| abstract_inverted_index.their | 267 |
| abstract_inverted_index.using | 232 |
| abstract_inverted_index.well. | 97 |
| abstract_inverted_index.where | 73 |
| abstract_inverted_index.which | 257, 316 |
| abstract_inverted_index.while | 86 |
| abstract_inverted_index.(BEST) | 19 |
| abstract_inverted_index.(CBER) | 12 |
| abstract_inverted_index.1-time | 263 |
| abstract_inverted_index.Center | 6 |
| abstract_inverted_index.Google | 141 |
| abstract_inverted_index.Health | 116, 243 |
| abstract_inverted_index.Safety | 18 |
| abstract_inverted_index.Survey | 114 |
| abstract_inverted_index.access | 31, 182, 311 |
| abstract_inverted_index.across | 218 |
| abstract_inverted_index.allows | 258, 287, 412 |
| abstract_inverted_index.cases. | 416 |
| abstract_inverted_index.cohort | 365 |
| abstract_inverted_index.deploy | 84, 294 |
| abstract_inverted_index.design | 82, 282, 351 |
| abstract_inverted_index.engage | 77 |
| abstract_inverted_index.files. | 338 |
| abstract_inverted_index.health | 269, 307, 314 |
| abstract_inverted_index.hosted | 138 |
| abstract_inverted_index.inform | 437 |
| abstract_inverted_index.obtain | 297 |
| abstract_inverted_index.paper, | 341 |
| abstract_inverted_index.parts: | 147 |
| abstract_inverted_index.points | 300 |
| abstract_inverted_index.record | 308 |
| abstract_inverted_index.single | 229 |
| abstract_inverted_index.study, | 188 |
| abstract_inverted_index.tools, | 37 |
| abstract_inverted_index.(HL7®) | 246 |
| abstract_inverted_index.(SHAPE) | 120 |
| abstract_inverted_index.Further | 404 |
| abstract_inverted_index.Methods | 135 |
| abstract_inverted_index.Patient | 118 |
| abstract_inverted_index.Results | 285 |
| abstract_inverted_index.capture | 419 |
| abstract_inverted_index.consent | 185, 261 |
| abstract_inverted_index.design, | 108 |
| abstract_inverted_index.disease | 63 |
| abstract_inverted_index.enabled | 211 |
| abstract_inverted_index.enables | 310 |
| abstract_inverted_index.engaged | 277 |
| abstract_inverted_index.enhance | 320 |
| abstract_inverted_index.enroll, | 91 |
| abstract_inverted_index.entries | 170 |
| abstract_inverted_index.history | 384 |
| abstract_inverted_index.improve | 41, 441 |
| abstract_inverted_index.leading | 242 |
| abstract_inverted_index.natural | 383 |
| abstract_inverted_index.novelty | 111 |
| abstract_inverted_index.ongoing | 369 |
| abstract_inverted_index.patient | 45, 313, 420, 431, 442 |
| abstract_inverted_index.process | 275 |
| abstract_inverted_index.quality | 126 |
| abstract_inverted_index.related | 49 |
| abstract_inverted_index.several | 22 |
| abstract_inverted_index.studies | 85 |
| abstract_inverted_index.thereby | 425 |
| abstract_inverted_index.through | 171, 359 |
| abstract_inverted_index.variety | 400 |
| abstract_inverted_index.(FHIR®) | 251 |
| abstract_inverted_index.Android, | 222 |
| abstract_inverted_index.CBER’s | 30 |
| abstract_inverted_index.Research | 11 |
| abstract_inverted_index.accuracy | 322 |
| abstract_inverted_index.advocacy | 432 |
| abstract_inverted_index.building | 213 |
| abstract_inverted_index.clinical | 402, 423 |
| abstract_inverted_index.codebase | 230 |
| abstract_inverted_index.complete | 190 |
| abstract_inverted_index.consent, | 92 |
| abstract_inverted_index.describe | 106 |
| abstract_inverted_index.develop, | 292 |
| abstract_inverted_index.diabetes | 364 |
| abstract_inverted_index.directly | 301 |
| abstract_inverted_index.download | 330 |
| abstract_inverted_index.efforts, | 128 |
| abstract_inverted_index.existing | 55 |
| abstract_inverted_index.increase | 103 |
| abstract_inverted_index.methods. | 325 |
| abstract_inverted_index.multiple | 278, 414 |
| abstract_inverted_index.patients | 87, 303 |
| abstract_inverted_index.platform | 72, 411 |
| abstract_inverted_index.records, | 315 |
| abstract_inverted_index.records. | 270 |
| abstract_inverted_index.scalable | 198, 410 |
| abstract_inverted_index.securely | 94 |
| abstract_inverted_index.software | 205 |
| abstract_inverted_index.sources, | 35 |
| abstract_inverted_index.studies. | 353, 403 |
| abstract_inverted_index.validate | 318 |
| abstract_inverted_index.Biologics | 8, 15 |
| abstract_inverted_index.Objective | 98 |
| abstract_inverted_index.Resources | 250 |
| abstract_inverted_index.SHAPE’s | 281 |
| abstract_inverted_index.awareness | 104 |
| abstract_inverted_index.comprises | 145 |
| abstract_inverted_index.deployed, | 178 |
| abstract_inverted_index.deploying | 215 |
| abstract_inverted_index.designing | 380 |
| abstract_inverted_index.diseases. | 388 |
| abstract_inverted_index.expansion | 26 |
| abstract_inverted_index.flexible, | 200 |
| abstract_inverted_index.implement | 376 |
| abstract_inverted_index.important | 298 |
| abstract_inverted_index.including | 24, 220 |
| abstract_inverted_index.interface | 254 |
| abstract_inverted_index.intuitive | 393 |
| abstract_inverted_index.leveraged | 202 |
| abstract_inverted_index.outcomes. | 443 |
| abstract_inverted_index.platform, | 121, 255 |
| abstract_inverted_index.practices | 378 |
| abstract_inverted_index.products. | 52 |
| abstract_inverted_index.providing | 426 |
| abstract_inverted_index.research, | 64 |
| abstract_inverted_index.versatile | 408 |
| abstract_inverted_index.1upHealth, | 256 |
| abstract_inverted_index.Background | 0 |
| abstract_inverted_index.Electronic | 306 |
| abstract_inverted_index.Evaluation | 9 |
| abstract_inverted_index.Experience | 119 |
| abstract_inverted_index.Framework. | 209 |
| abstract_inverted_index.Healthcare | 248 |
| abstract_inverted_index.Initiative | 20 |
| abstract_inverted_index.analytics, | 36 |
| abstract_inverted_index.caregivers | 89 |
| abstract_inverted_index.challenges | 56 |
| abstract_inverted_index.comprising | 163 |
| abstract_inverted_index.conditions | 48 |
| abstract_inverted_index.electronic | 268 |
| abstract_inverted_index.especially | 60 |
| abstract_inverted_index.illustrate | 343 |
| abstract_inverted_index.integrated | 239 |
| abstract_inverted_index.interface. | 156 |
| abstract_inverted_index.platforms, | 219 |
| abstract_inverted_index.recognized | 66 |
| abstract_inverted_index.Conclusions | 389 |
| abstract_inverted_index.agile-based | 274 |
| abstract_inverted_index.application | 154, 252 |
| abstract_inverted_index.caregivers. | 305 |
| abstract_inverted_index.clinicians, | 428 |
| abstract_inverted_index.collection, | 59 |
| abstract_inverted_index.components. | 192 |
| abstract_inverted_index.demonstrate | 355 |
| abstract_inverted_index.development | 206, 439 |
| abstract_inverted_index.enhancement | 28 |
| abstract_inverted_index.environment | 143 |
| abstract_inverted_index.established | 13 |
| abstract_inverted_index.experiences | 46 |
| abstract_inverted_index.improvement | 127 |
| abstract_inverted_index.integration | 309 |
| abstract_inverted_index.objectives, | 23 |
| abstract_inverted_index.open-source | 129, 204 |
| abstract_inverted_index.participant | 151, 180 |
| abstract_inverted_index.participate | 95 |
| abstract_inverted_index.programming | 155, 253 |
| abstract_inverted_index.progressive | 224 |
| abstract_inverted_index.regulators, | 427 |
| abstract_inverted_index.self-report | 169 |
| abstract_inverted_index.application, | 125, 150 |
| abstract_inverted_index.coordinators | 75, 289, 346 |
| abstract_inverted_index.data-capture | 324 |
| abstract_inverted_index.development, | 109 |
| abstract_inverted_index.development. | 284 |
| abstract_inverted_index.enhancement. | 134 |
| abstract_inverted_index.hypothetical | 361 |
| abstract_inverted_index.participants | 80, 259 |
| abstract_inverted_index.perspectives | 421 |
| abstract_inverted_index.researchers, | 429 |
| abstract_inverted_index.stakeholders | 279 |
| abstract_inverted_index.standardized | 233 |
| abstract_inverted_index.Effectiveness | 16 |
| abstract_inverted_index.administrator | 149, 158, 327 |
| abstract_inverted_index.applicability | 358 |
| abstract_inverted_index.applications, | 226 |
| abstract_inverted_index.availability, | 130 |
| abstract_inverted_index.comprehensive | 71, 395 |
| abstract_inverted_index.customization | 405 |
| abstract_inverted_index.functionality | 123 |
| abstract_inverted_index.metachromatic | 373 |
| abstract_inverted_index.organizations | 433 |
| abstract_inverted_index.technologies. | 235 |
| abstract_inverted_index.understanding | 43 |
| abstract_inverted_index.Administration | 5 |
| abstract_inverted_index.CBER-regulated | 51 |
| abstract_inverted_index.leukodystrophy | 374 |
| abstract_inverted_index.questionnaires | 167, 295 |
| abstract_inverted_index.data-collection | 396 |
| abstract_inverted_index.fit-for-purpose | 33 |
| abstract_inverted_index.infrastructures | 39 |
| abstract_inverted_index.Interoperability | 249 |
| abstract_inverted_index.patient-centered | 352 |
| abstract_inverted_index.regulatory-grade | 382 |
| abstract_inverted_index.FHIR®–formatted | 336 |
| cited_by_percentile_year.max | 96 |
| cited_by_percentile_year.min | 94 |
| corresponding_author_ids | https://openalex.org/A5001244005 |
| countries_distinct_count | 1 |
| institutions_distinct_count | 10 |
| corresponding_institution_ids | https://openalex.org/I1318287680, https://openalex.org/I1320320070 |
| sustainable_development_goals[0].id | https://metadata.un.org/sdg/9 |
| sustainable_development_goals[0].score | 0.5 |
| sustainable_development_goals[0].display_name | Industry, innovation and infrastructure |
| citation_normalized_percentile.value | 0.75840278 |
| citation_normalized_percentile.is_in_top_1_percent | False |
| citation_normalized_percentile.is_in_top_10_percent | False |