
OpenAlex is a bibliographic catalogue of scientific papers, authors and institutions accessible in open access mode, named after the Library of Alexandria. It's citation coverage is excellent and I hope you will find utility in this listing of citing articles!
If you click the article title, you'll navigate to the article, as listed in CrossRef. If you click the Open Access links, you'll navigate to the "best Open Access location". Clicking the citation count will open this listing for that article. Lastly at the bottom of the page, you'll find basic pagination options.
Requested Article:
Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review
Emily G. Miller, Amanda Woodward, Grace Flinchum, et al.
Genetics in Medicine (2021) Vol. 23, Iss. 12, pp. 2250-2259
Open Access | Times Cited: 27
Emily G. Miller, Amanda Woodward, Grace Flinchum, et al.
Genetics in Medicine (2021) Vol. 23, Iss. 12, pp. 2250-2259
Open Access | Times Cited: 27
Showing 1-25 of 27 citing articles:
Perceived utility and disutility of genomic sequencing for pediatric patients: Perspectives from parents with diverse sociodemographic characteristics
Meghan C. Halley, Jennifer L. Young, Liliana Fernández, et al.
American Journal of Medical Genetics Part A (2022) Vol. 188, Iss. 4, pp. 1088-1101
Open Access | Times Cited: 31
Meghan C. Halley, Jennifer L. Young, Liliana Fernández, et al.
American Journal of Medical Genetics Part A (2022) Vol. 188, Iss. 4, pp. 1088-1101
Open Access | Times Cited: 31
Patient Perspectives of Health System Barriers to Accessing Care for Hidradenitis Suppurativa
Leandra A. Barnes, Neha Shukla, Maia Paul, et al.
JAMA Dermatology (2023) Vol. 159, Iss. 5, pp. 510-510
Open Access | Times Cited: 10
Leandra A. Barnes, Neha Shukla, Maia Paul, et al.
JAMA Dermatology (2023) Vol. 159, Iss. 5, pp. 510-510
Open Access | Times Cited: 10
Rare Disease Narratives on Social Media: A Content Analysis
H Park, Cassidy Scott, Hadley Stevens Smith, et al.
Genetics in Medicine Open (2025) Vol. 3, pp. 102844-102844
Open Access
H Park, Cassidy Scott, Hadley Stevens Smith, et al.
Genetics in Medicine Open (2025) Vol. 3, pp. 102844-102844
Open Access
Presenting Clinical Information on Rare Chromosome 6 Disorders via a Parent‐Centered Website: Parental and Professional Views
Eleana Rraku, Aafke Engwerda, Tiago da Silva Medina, et al.
American Journal of Medical Genetics Part A (2025)
Open Access
Eleana Rraku, Aafke Engwerda, Tiago da Silva Medina, et al.
American Journal of Medical Genetics Part A (2025)
Open Access
How many zebras are there now? An updated report on publications on rare diseases in medical literature
Tara Moroz, Michael Taylor, Paula Schmitt, et al.
Future Rare Diseases (2025) Vol. 5, Iss. 1
Open Access
Tara Moroz, Michael Taylor, Paula Schmitt, et al.
Future Rare Diseases (2025) Vol. 5, Iss. 1
Open Access
Perspectives of People With Cancer or Hereditary Cancer Risk on the Use and Value of Online Peer Support
Jill Holdren, Karl Surkan, Andrea S. Downing
Journal of patient-centered research and reviews (2023) Vol. 10, Iss. 2, pp. 58-67
Open Access | Times Cited: 9
Jill Holdren, Karl Surkan, Andrea S. Downing
Journal of patient-centered research and reviews (2023) Vol. 10, Iss. 2, pp. 58-67
Open Access | Times Cited: 9
Exploring the role of digital tools in rare disease management: An interview‐based study
Andrea Chang, Sarah D. Huang, Daniel J. Benjamin, et al.
Journal of Genetic Counseling (2024)
Open Access | Times Cited: 2
Andrea Chang, Sarah D. Huang, Daniel J. Benjamin, et al.
Journal of Genetic Counseling (2024)
Open Access | Times Cited: 2
Role of social media in the presentation of disorders of gut–brain interaction: Review and recommendations
Michael R Salzberg, Hannah Kim, Chamara Basnayake, et al.
Journal of Gastroenterology and Hepatology (2024)
Open Access | Times Cited: 2
Michael R Salzberg, Hannah Kim, Chamara Basnayake, et al.
Journal of Gastroenterology and Hepatology (2024)
Open Access | Times Cited: 2
Perspectives of Rare Disease Social Media Group Participants on Engaging With Genetic Counselors: Mixed Methods Study
Megan Yabumoto, Emily G. Miller, Anoushka Rao, et al.
Journal of Medical Internet Research (2022) Vol. 24, Iss. 12, pp. e42084-e42084
Open Access | Times Cited: 10
Megan Yabumoto, Emily G. Miller, Anoushka Rao, et al.
Journal of Medical Internet Research (2022) Vol. 24, Iss. 12, pp. e42084-e42084
Open Access | Times Cited: 10
Parent-reported phenotype data on chromosome 6 aberrations collected via an online questionnaire: data consistency and data availability
Aafke Engwerda, Barbara Frentz, Eleana Rraku, et al.
Orphanet Journal of Rare Diseases (2023) Vol. 18, Iss. 1
Open Access | Times Cited: 4
Aafke Engwerda, Barbara Frentz, Eleana Rraku, et al.
Orphanet Journal of Rare Diseases (2023) Vol. 18, Iss. 1
Open Access | Times Cited: 4
Parents’ Views on Autopsy, Organ Donation, and Research Donation After Neonatal Death
Elizabeth E. Crouch, Carlos Damas, William Cody Bartrug, et al.
JAMA Network Open (2023) Vol. 6, Iss. 11, pp. e2341533-e2341533
Open Access | Times Cited: 4
Elizabeth E. Crouch, Carlos Damas, William Cody Bartrug, et al.
JAMA Network Open (2023) Vol. 6, Iss. 11, pp. e2341533-e2341533
Open Access | Times Cited: 4
Community Social Networking for Ehlers–Danlos Syndrome
Elisabeth Callen, Tarin Clay, Wendy Cogan, et al.
Health Education & Behavior (2024)
Closed Access | Times Cited: 1
Elisabeth Callen, Tarin Clay, Wendy Cogan, et al.
Health Education & Behavior (2024)
Closed Access | Times Cited: 1
Disruptions in the Cystic Fibrosis Community’s Experiences and Concerns During the COVID-19 Pandemic: Topic Modeling and Time Series Analysis of Reddit Comments
Lean Franzl Yao, Kiki Ferawati, Kongmeng Liew, et al.
Journal of Medical Internet Research (2023) Vol. 25, pp. e45249-e45249
Open Access | Times Cited: 3
Lean Franzl Yao, Kiki Ferawati, Kongmeng Liew, et al.
Journal of Medical Internet Research (2023) Vol. 25, pp. e45249-e45249
Open Access | Times Cited: 3
Patient preferences and comfort for cancer survivorship models of care: results of an online survey
Deanna J. Attai, Matthew S. Katz, Elani Streja, et al.
Journal of Cancer Survivorship (2022) Vol. 17, Iss. 5, pp. 1327-1337
Closed Access | Times Cited: 5
Deanna J. Attai, Matthew S. Katz, Elani Streja, et al.
Journal of Cancer Survivorship (2022) Vol. 17, Iss. 5, pp. 1327-1337
Closed Access | Times Cited: 5
IMPOWER: a national patient-generated registry for intestinal malrotation exploring diagnosis, treatment, and surgical outcomes
Sydney A. Martinez, Scott C. Fligor, Savas T. Tsikis, et al.
Orphanet Journal of Rare Diseases (2023) Vol. 18, Iss. 1
Open Access | Times Cited: 2
Sydney A. Martinez, Scott C. Fligor, Savas T. Tsikis, et al.
Orphanet Journal of Rare Diseases (2023) Vol. 18, Iss. 1
Open Access | Times Cited: 2
The Use of Social Media to Express and Manage Medical Uncertainty in Dyskeratosis Congenita: A Content Analysis (Preprint)
Emily Pearce, Hannah A. Raj, Ngozika Emezienna, et al.
JMIR Infodemiology (2023)
Open Access | Times Cited: 1
Emily Pearce, Hannah A. Raj, Ngozika Emezienna, et al.
JMIR Infodemiology (2023)
Open Access | Times Cited: 1
The power and pitfalls of using social media to study rare cancers
Bryn Nelson, William Faquin
Cancer Cytopathology (2024) Vol. 132, Iss. 7, pp. 391-392
Closed Access
Bryn Nelson, William Faquin
Cancer Cytopathology (2024) Vol. 132, Iss. 7, pp. 391-392
Closed Access
Health-Related Quality of Life in Patients with Diverse Rare Diseases: An Online Survey
Anoushka Rao, Megan Yabumoto, Eliana Ward-Lev, et al.
Genetics in Medicine Open (2024) Vol. 2, pp. 101889-101889
Open Access
Anoushka Rao, Megan Yabumoto, Eliana Ward-Lev, et al.
Genetics in Medicine Open (2024) Vol. 2, pp. 101889-101889
Open Access
Myasthenia Gravis: utilising cross-platform quantitative content analysis to uncover and validate unmet needs
David Legg, Andreas Meisel, Maike Stein, et al.
Frontiers in Neurology (2024) Vol. 15
Open Access
David Legg, Andreas Meisel, Maike Stein, et al.
Frontiers in Neurology (2024) Vol. 15
Open Access
“Crying in the wilderness” the use of online support in telomere biology disorders: thematic analysis (Preprint)
Emily Pearce, Alina Majid, Toniya Brown, et al.
JMIR Formative Research (2024) Vol. 8, pp. e64343-e64343
Open Access
Emily Pearce, Alina Majid, Toniya Brown, et al.
JMIR Formative Research (2024) Vol. 8, pp. e64343-e64343
Open Access
SMN2 Copy Number Association with Spinal Muscular Atrophy Severity: Insights from Colombian Patients
José Lamadrid-González, Sandra Milena Castellar-Leones, Julio Contreras-Velásquez, et al.
Journal of Clinical Medicine (2024) Vol. 13, Iss. 21, pp. 6402-6402
Open Access
José Lamadrid-González, Sandra Milena Castellar-Leones, Julio Contreras-Velásquez, et al.
Journal of Clinical Medicine (2024) Vol. 13, Iss. 21, pp. 6402-6402
Open Access
Better Understand Rare Disease Patients’ Needs by Analyzing Social Media Data – a Case Study of Cystic Fibrosis
Qian Zhu, Eric Sundstrom, Yanji Xu
2021 IEEE International Conference on Bioinformatics and Biomedicine (BIBM) (2021), pp. 2618-2621
Closed Access | Times Cited: 3
Qian Zhu, Eric Sundstrom, Yanji Xu
2021 IEEE International Conference on Bioinformatics and Biomedicine (BIBM) (2021), pp. 2618-2621
Closed Access | Times Cited: 3
A systematic review of the available literature on the use of social media in brain tumor
Hossein Motahari-Nezhad
Global Knowledge Memory and Communication (2023)
Closed Access
Hossein Motahari-Nezhad
Global Knowledge Memory and Communication (2023)
Closed Access
The Use of Social Media to Express and Manage Medical Uncertainty in Dyskeratosis Congenita: A Content Analysis (Preprint)
Emily Pearce, Hannah A. Raj, Ngozika Emezienna, et al.
(2023)
Closed Access
Emily Pearce, Hannah A. Raj, Ngozika Emezienna, et al.
(2023)
Closed Access