🏆 Finalist — NIH Data Sharing Index (“S-Index”) Challenge

Fostering Data Sharing

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Anne Pariser

Anne Pariser

ORCID: 0000-0002-9421-0126

Biochemistry, Genetics and Molecular BiologyEconomics, Econometrics and FinanceMedicine

Pilot corpus only

This score is computed over theSindex pilot corpus and does not cover the full scientific literature. Scores are relative to papers we have ingested — papers, authors, and institutions outside the pilot are not represented. Methodology.

Top 1%percentile

10.0Author DataRank

Indexed papers

3in pilot corpus

datarank_citation_only_1hop_v6· scope data_onlyMethodology

Why this DataRank?

An author's DataRank is the sum of the DataRanks of all 3 indexed papers attributed to them. A prolific author with many moderate-impact papers can outrank one with a single high-impact paper.

Author scores recompute whenever paper DataRanks are refreshed, so this number lags the underlying paper scores by at most one batch run.

Read the full methodology →

Top data-sharing exemplar

The highest-impact dataset this researcher has shared, ranked by DataRank — the single contribution doing the most to lift their data-sharing standing.

The national economic burden of rare disease in the United States in 2019

Orphanet Journal of Rare Diseases(2022)10.1186/s13023-022-02299-5

Top 4%

5.3DataRank

Top 4%164 citations

Inna Cintina, Anne Pariser, Elisabeth Oehrlein, Jamie Sullivan, Annie Kennedy +1 more

Papers

Driven by 13 papers — median percentile 93. Top paper: “The national economic burden of rare disease in the United States in 2019”.

The national economic burden of rare disease in the United States in 2019

Orphanet Journal of Rare Diseases(2022)10.1186/s13023-022-02299-5

Top 4%

5.3DataRank

Top 4%164 citations

Inna Cintina, Anne Pariser, Elisabeth Oehrlein, Jamie Sullivan, Annie Kennedy +1 more

The IDeaS initiative: pilot study to assess the impact of rare diseases on patients and healthcare systems

Orphanet Journal of Rare Diseases(2021)10.1186/s13023-021-02061-3

Top 7%

3.3DataRank

Top 7%106 citations

Christine M. Cutillo, Ramaa Nathan, Pierantonio Russo, Bryan Laraway, Melissa A Haendel +10 more

Artificial Intelligence in Medical Imaging and its Impact on the Rare Disease Community: Threats, Challenges and Opportunities

PET Clinics(2021)10.1016/j.cpet.2021.09.009

N/A

1.8DataRank · unranked

56 citations

Faraz Farhadi, Michael Morris, Moozhan Nikpanah, Arman Rahmim, Yanji Xu +7 more

An integrative knowledge graph for rare diseases, derived from the Genetic and Rare Diseases Information Center (GARD)

Journal of Biomedical Semantics(2020)10.1186/s13326-020-00232-y

Top 15%

1.4DataRank

Top 15%61 citations

Ðắc-Trung Nguyễn, Ivan Grishagin, Noel Southall, Eric Sid, Anne Pariser +1 more

Recent Advances in Systems and Network Medicine: Meeting Report from the First International Conference in Systems and Network Medicine

Systems Medicine(2020)10.1089/sysm.2020.0001

N/A

0.696DataRank · unranked

12 citations

Ancha Baranova, Pat Baird, Elia Brodsky, Atul Janardhan Butte, Amrita K. Cheema +45 more

The Platform Vector Gene Therapies Project: Increasing the Efficiency of Adeno-Associated Virus Gene Therapy Clinical Trial Startup

Human Gene Therapy(2020)10.1089/hum.2020.259

N/A

0.529DataRank · unranked

33 citations

Elizabeth A. Ottinger, Deanna Portero, Richa Madan Lomash, Asaf Alimardanov, Pramod Terse +35 more

Leveraging the UMLS As a Data Standard for Rare Disease Data Normalization and Harmonization

Methods of Information in Medicine(2020)10.1055/s-0040-1718940

N/A

0.385DataRank · unranked

12 citations

Ðắc-Trung Nguyễn, Eric Sid, Anne Pariser, Qian Zhu

Towards the international interoperability of clinical research networks for rare diseases: recommendations from the IRDiRC Task Force

Orphanet Journal of Rare Diseases(2023)10.1186/s13023-023-02650-4

N/A

0.373DataRank · unranked

11 citations

Galliano Zanello, Dixie B. Baker, Lora Black, Isabella Brambilla, Orion J. Buske +14 more

Scientific evidence based rare disease research discovery with research funding data in knowledge graph

Orphanet Journal of Rare Diseases(2021)10.1186/s13023-021-02120-9

N/A

0DataRank · unranked

38 citations

Ðắc-Trung Nguyễn, Timothy Sheils, Gioconda Alyea, Eric Sid, Yanji Xu +4 more

The National Economic Burden of Rare Disease in United States in 2019

Research Square(2021)10.21203/rs.3.rs-1046815/v1

N/A

0DataRank · unranked

3 citations

Inna Cintina, Anne Pariser, Elisabeth Oehrlein, Jamie Sullivan, Annie Kennedy +1 more

Phenotypically Similar Rare Disease Identification from an Integrative Knowledge Graph for Data Harmonization: Preliminary Study

JMIR Medical Informatics(2020)10.2196/18395

N/A

0DataRank · unranked

4 citations

Ðắc-Trung Nguyễn, Gioconda Alyea, Karen Hanson, Eric Sid, Anne Pariser +1 more

Global Regulatory and Public Health Initiatives to Advance Pediatric Drug Development for Rare Diseases

Therapeutic Innovation & Regulatory Science(2022)10.1007/s43441-022-00409-w

N/A

0DataRank · unranked

30 citations

Ralph Bax, Alysha Croker, Dionna Green, Andrea Gropman, Ágnes Klein +10 more

Successfully Navigating Food and Drug Administration Orphan Drug and Rare Pediatric Disease Designations for AAV9-hPCCA Gene Therapy: The National Institutes of Health Platform Vector Gene Therapy Experience

Human Gene Therapy(2023)10.1089/hum.2022.232

N/A

0DataRank · unranked

10 citations

Oleg A. Shchelochkov, Randy J. Chandler, NIH PaVe-GT Team, Charles P. Venditti, Anne Pariser +38 more