Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review
出版年份 2021 全文链接
标题
Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review
作者
关键词
-
出版物
GENETICS IN MEDICINE
Volume -, Issue -, Pages -
出版商
Springer Science and Business Media LLC
发表日期
2021-07-20
DOI
10.1038/s41436-021-01273-z
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注意:仅列出部分参考文献,下载原文获取全部文献信息。- Taking an antiracist posture in scientific publications in human genetics and genomics
- (2021) Kyle B. Brothers et al. GENETICS IN MEDICINE
- Adolescents with chronic disease and social media: a cross-sectional study
- (2020) Laura De Nardi et al. ARCHIVES OF DISEASE IN CHILDHOOD
- The challenges of living with and managing epidermolysis bullosa: insights from patients and caregivers
- (2020) Anna L. Bruckner et al. Orphanet Journal of Rare Diseases
- Natural history of Ollier disease and Maffucci syndrome: Patient survey and review of clinical literature
- (2020) Jad M. El Abiad et al. AMERICAN JOURNAL OF MEDICAL GENETICS PART A
- A novel approach to conducting clinical trials in the community setting: utilizing patient-driven platforms and social media to drive web-based patient recruitment
- (2020) Janelle Applequist et al. BMC Medical Research Methodology
- Cholesteatoma and family history: An international survey
- (2020) Rachael Collins et al. CLINICAL OTOLARYNGOLOGY
- Ocular Findings in Pontine Tegmental Cap Dysplasia
- (2020) Lauren C. Mehner et al. CORNEA
- Who ever heard of 16p11.2 deletion syndrome? Parents’ perspectives on a susceptibility copy number variation syndrome
- (2020) Lotte Kleinendorst et al. EUROPEAN JOURNAL OF HUMAN GENETICS
- Public Perception of a Normal Head Shape in Children With Sagittal Craniosynostosis
- (2020) Sultan Z. Al-Shaqsi et al. JOURNAL OF CRANIOFACIAL SURGERY
- Participation among Children with Arthrogryposis Multiplex Congenita: A Scoping Review
- (2020) Caroline Elfassy et al. PHYSICAL & OCCUPATIONAL THERAPY IN PEDIATRICS
- Health-related quality of life and symptom burden of epithelioid hemangioendothelioma patients: a global patient-driven Facebook study in a very rare malignancy
- (2020) Marije E. Weidema et al. ACTA ONCOLOGICA
- Patient and family social media use surrounding a novel treatment for a rare genetic disease: a qualitative interview study
- (2020) Alexander A. Iyer et al. GENETICS IN MEDICINE
- Microtia and Craniofacial Microsomia: Content Analysis of Facebook Groups
- (2020) Hailey M. Umbaugh et al. INTERNATIONAL JOURNAL OF PEDIATRIC OTORHINOLARYNGOLOGY
- Patient-reported outcomes in adult females with bladder exstrophy: A study of long-term sexual, reproductive and urinary outcomes using social media
- (2020) Katie L. Canalichio et al. Journal of Pediatric Urology
- Determining the Topic Evolution and Sentiment Polarity for Albinism in a Chinese Online Health Community: Machine Learning and Social Network Analysis
- (2020) Qiqing Bi et al. JMIR Medical Informatics
- Development of a Social Network for People Without a Diagnosis (RarePairs): Evaluation Study
- (2020) Lara Kühnle et al. JOURNAL OF MEDICAL INTERNET RESEARCH
- Application of WeChat ‐assisted peri‐operative care in children with congenital megacolon
- (2020) Yong Shen et al. JOURNAL OF PAEDIATRICS AND CHILD HEALTH
- Participation in patient support forums may put rare disease patient data at risk of re-identification
- (2020) James Gow et al. Orphanet Journal of Rare Diseases
- Development and Validation of the Nasal Outcome Score for Epistaxis in Hereditary Hemorrhagic Telangiectasia (NOSE HHT)
- (2020) Andrew M. Peterson et al. JAMA Otolaryngology-Head & Neck Surgery
- Paroxysmal symptoms in Neuromyelitis optica spectrum disorder: Results from an online patient survey
- (2020) Itay Lotan et al. Multiple Sclerosis and Related Disorders
- The Online Support Group as a Community: A Thematic Content Analysis of an Online Support Group for Idiopathic Subglottic Stenosis
- (2019) Daniel Haik et al. ANNALS OF OTOLOGY RHINOLOGY AND LARYNGOLOGY
- Social media discussions provide new insight about perceptions of hydroxyurea in the sickle cell community
- (2019) Aisha L. Walker et al. AMERICAN JOURNAL OF HEMATOLOGY
- New onset transverse myelitis diagnostic accuracy and patient experiences
- (2019) Benjamin M. Greenberg et al. Multiple Sclerosis and Related Disorders
- The value of diagnostic testing for parents of children with rare genetic diseases
- (2019) Deborah A. Marshall et al. GENETICS IN MEDICINE
- Self-reported alcohol use in the cystic fibrosis community
- (2019) Erin M. Lowery et al. Journal of Cystic Fibrosis
- A survey of adults with anorectal malformations: perspectives on educational, vocational, and psychosocial experiences
- (2019) Laura Judd-Glossy et al. PEDIATRIC SURGERY INTERNATIONAL
- Results from an online survey of adults with cystic fibrosis: Accessing and using life expectancy information
- (2019) Ruth H. Keogh et al. PLoS One
- Assessment of the Information Sources and Interest in Research Collaboration Among Individuals with Vascular Ehlers-Danlos Syndrome
- (2019) Sherene Shalhub et al. ANNALS OF VASCULAR SURGERY
- Sexual functioning, sexual esteem, genital self-image and psychological and relational functioning in women with Mayer–Rokitansky–Küster–Hauser syndrome: a case–control study
- (2019) P T M Weijenborg et al. HUMAN REPRODUCTION
- Comparative Treatment Outcomes for Patients With Idiopathic Subglottic Stenosis
- (2019) Alexander Gelbard et al. JAMA Otolaryngology-Head & Neck Surgery
- Impact of Pathologist Involvement in Sarcoma and Rare Tumor Patient Support Groups on Facebook: A Survey of 542 Patients and Family Members
- (2018) Jasmine Haller et al. ARCHIVES OF PATHOLOGY & LABORATORY MEDICINE
- The Challenge of Rare Diseases
- (2018) James K. Stoller CHEST
- Exploring the Medical and Psychosocial Concerns of Adolescents and Young Adults With Craniofacial Microsomia
- (2018) Kayla V. Hamilton et al. CLEFT PALATE-CRANIOFACIAL JOURNAL
- The phenotypic spectrum of proximal 6q deletions based on a large cohort derived from social media and literature reports
- (2018) Aafke Engwerda et al. EUROPEAN JOURNAL OF HUMAN GENETICS
- Children’s at Home: Pilot Study Assessing Dedicated Social Media for Parents of Adolescents with Neurofibromatosis Type 1
- (2018) Christina Akre et al. Journal of Genetic Counseling
- Leveraging Social Networking Sites for an Autoimmune Hepatitis Genetic Repository: Pilot Study to Evaluate Feasibility
- (2018) Megan Comerford et al. JOURNAL OF MEDICAL INTERNET RESEARCH
- Experience with the use of a virtual social network on Facebook for Brazilian patients with gestational trophoblastic disease - a netnography study (Preprint)
- (2018) Marisa Diniz et al. JOURNAL OF MEDICAL INTERNET RESEARCH
- Exploring the Medical and Psychosocial Concerns of Adolescents and Young Adults With Craniofacial Microsomia
- (2018) Kayla V. Hamilton et al. CLEFT PALATE-CRANIOFACIAL JOURNAL
- Using social media for patient-reported outcomes: A study of genital appearance and sexual function in adult bladder exstrophy patients
- (2018) C.K. Rowe et al. Journal of Pediatric Urology
- KAT6A Syndrome: genotype–phenotype correlation in 76 patients with pathogenic KAT6A variants
- (2018) Joanna Kennedy et al. GENETICS IN MEDICINE
- Caregiver Involvement via Social Media can help to Prioritize Research and Resource Needs for Hirschsprung�s Disease (Preprint)
- (2018) Richard Keijzer et al. JOURNAL OF MEDICAL INTERNET RESEARCH
- Mining Facebook Data of People with Rare Diseases: A Content-Based and Temporal Analysis
- (2018) Laia Subirats et al. International Journal of Environmental Research and Public Health
- Caregiver priorities for endpoints to evaluate treatments for Prader-Willi syndrome: a best-worst scaling
- (2018) Jui-Hua Tsai et al. JOURNAL OF MEDICAL ECONOMICS
- Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) on Social Media: #BPDCN—Increasing Exposure over Two Years Since Inception of a Disease-Specific Twitter Community
- (2018) Naveen Pemmaraju et al. Current Hematologic Malignancy Reports
- The epileptology of Koolen-de Vries syndrome: Electro-clinico-radiologic findings in 31 patients
- (2017) Kenneth A. Myers et al. EPILEPSIA
- Microtia and Social Media
- (2017) Sarvnaz Sepehripour et al. JOURNAL OF CRANIOFACIAL SURGERY
- Adherence to infection prevention and control guidelines: A vignette-based study of decision-making and risk-taking in young adults with cystic fibrosis
- (2017) Grace Bowmer et al. Journal of Cystic Fibrosis
- Parent Perspectives of Support Received from Physicians and/or Genetic Counselors Following a Decision to Continue a Pregnancy with a Prenatal Diagnosis of Trisomy 13/18
- (2017) Stephanie E. Wallace et al. Journal of Genetic Counseling
- The Use of Facebook in Recruiting Participants for Health Research Purposes: A Systematic Review
- (2017) Christopher Whitaker et al. JOURNAL OF MEDICAL INTERNET RESEARCH
- Experience With Direct-to-Patient Recruitment for Enrollment Into a Clinical Trial in a Rare Disease: A Web-Based Study
- (2017) Jeffrey Krischer et al. JOURNAL OF MEDICAL INTERNET RESEARCH
- Use of social media to assess the effectiveness of vagal nerve stimulation in Dravet syndrome: A caregiver's perspective
- (2017) Rushna Ali et al. JOURNAL OF THE NEUROLOGICAL SCIENCES
- Characterization and utilization of an international neurofibromatosis web-based, patient–entered registry: An observational study
- (2017) Mindell Seidlin et al. PLoS One
- Disease-specific hashtags and the creation of Twitter medical communities in hematology and oncology
- (2017) Naveen Pemmaraju et al. SEMINARS IN HEMATOLOGY
- Financial burden is associated with worse health-related quality of life in adults with multiple endocrine neoplasia type 1
- (2017) Benjamin J. Peipert et al. SURGERY
- Analysis of First-Year Twitter Metrics of a Rare Disease Community for Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) on Social Media: #BPDCN
- (2017) Naveen Pemmaraju et al. Current Hematologic Malignancy Reports
- Rare Cancers and Social Media: Analysis of Twitter Metrics in the First 2 Years of a Rare-Disease Community for Myeloproliferative Neoplasms on Social Media—#MPNSM
- (2017) Naveen Pemmaraju et al. Current Hematologic Malignancy Reports
- The transition of patients with rare diseases between providers: the patient journey from the patient perspective
- (2017) Lucia Ferrara et al. International Journal of Integrated Care
- What Can Big Data Offer the Pharmacovigilance of Orphan Drugs?
- (2016) John Price CLINICAL THERAPEUTICS
- Health screening behaviors among adults with hereditary hemorrhagic telangiectasia in North America
- (2016) Melanie Baxter et al. GENETICS IN MEDICINE
- Pigmented villonodular synovitis: a crowdsourcing study of two hundred and seventy two patients
- (2016) Lizz van der Heijden et al. INTERNATIONAL ORTHOPAEDICS
- The Use of Social Media in Recruitment for Medical Research Studies: A Scoping Review
- (2016) Jane Topolovec-Vranic et al. JOURNAL OF MEDICAL INTERNET RESEARCH
- The importance of social media for patients and families affected by congenital anomalies: A Facebook cross-sectional analysis and user survey
- (2016) Robyn Jacobs et al. JOURNAL OF PEDIATRIC SURGERY
- Genomics is failing on diversity
- (2016) Alice B. Popejoy et al. NATURE
- Sickle cell disease related internet activity is three times less frequent than cystic fibrosis related internet activity
- (2016) Christina M. Barriteau et al. PEDIATRIC BLOOD & CANCER
- Exploring social media for patient perspectives of sickle cell disease
- (2016) Benita T. Liao et al. PEDIATRIC HEMATOLOGY AND ONCOLOGY
- What happens whenN = 1 and you want plus 1?
- (2016) Matthew Might et al. PRENATAL DIAGNOSIS
- Seeking and sharing: why the pulmonary fibrosis community engages the web 2.0 environment
- (2016) Karen Albright et al. BMC Pulmonary Medicine
- Perception of first respiratory infection with Pseudomonas aeruginosa by people with cystic fibrosis and those close to them: an online qualitative study
- (2016) Sally C Palser et al. BMJ Open
- Social Media and Internet Resources for Patients with Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN)
- (2016) Naveen Pemmaraju et al. Current Hematologic Malignancy Reports
- Marfan syndrome patient experiences as ascertained through postings on social media sites
- (2015) Erin Kelleher et al. AMERICAN JOURNAL OF MEDICAL GENETICS PART A
- What is the Proportion of Patients With Multiple Hereditary Exostoses Who Undergo Malignant Degeneration?
- (2015) Cory M. Czajka et al. CLINICAL ORTHOPAEDICS AND RELATED RESEARCH
- An exploration of how young people and parents use online support in the context of living with cystic fibrosis
- (2015) Susan Kirk et al. HEALTH EXPECTATIONS
- Impact of Psychiatric Comorbidity and Cognitive Deficit on Function in 22q11.2 Deletion Syndrome
- (2015) James J. Yi et al. JOURNAL OF CLINICAL PSYCHIATRY
- The Contribution of Online Peer-to-Peer Communication Among Patients With Adrenal Disease to Patient-Centered Care
- (2015) Dirkjan Kauw et al. JOURNAL OF MEDICAL INTERNET RESEARCH
- Fontan-Associated Protein-Losing Enteropathy and Plastic Bronchitis
- (2015) Kurt R. Schumacher et al. JOURNAL OF PEDIATRICS
- The significance of the clavicle on shoulder girdle function
- (2015) Alexander Van Tongel et al. JOURNAL OF SHOULDER AND ELBOW SURGERY
- Coping styles in adults with cystic fibrosis: implications for emotional and social quality of life
- (2015) Rachel Mc Hugh et al. Psychology Health & Medicine
- Social Media and Myeloproliferative Neoplasms (MPN)—Focus on Twitter and the Development of a Disease-specific Community: #MPNSM
- (2015) Naveen Pemmaraju et al. Current Hematologic Malignancy Reports
- Familial Spontaneous Coronary Artery Dissection
- (2015) Kashish Goel et al. JAMA Internal Medicine
- Facebook as a Recruitment Tool for Adolescent Health Research: A Systematic Review
- (2014) Krestina L. Amon et al. Academic Pediatrics
- Evaluation of participant recruitment methods to a rare disease online registry
- (2014) Kimberly J. Johnson et al. AMERICAN JOURNAL OF MEDICAL GENETICS PART A
- YouTube as a source of information about retinitis pigmentosa
- (2014) G Guthrie et al. EYE
- Assessing patients' and caregivers' perspectives on stability of factor VIII products for haemophilia A: a web-based study in the United States and Canada
- (2014) D. B. DiBenedetti et al. HAEMOPHILIA
- Beyond Traditional Advertisements: Leveraging Facebook’s Social Structures for Research Recruitment
- (2014) Rupa S Valdez et al. JOURNAL OF MEDICAL INTERNET RESEARCH
- Analysis of a Parent-Initiated Social Media Campaign for Hirschsprung’s Disease
- (2014) Kristy Wittmeier et al. JOURNAL OF MEDICAL INTERNET RESEARCH
- Social Network Sites as a Mode to Collect Health Data: A Systematic Review
- (2014) Fahdah Alshaikh et al. JOURNAL OF MEDICAL INTERNET RESEARCH
- Social Media Methods for Studying Rare Diseases
- (2014) K. R. Schumacher et al. PEDIATRICS
- Use of social media to conduct a cross-sectional epidemiologic and quality of life survey of patients with neuroendocrine carcinoma of the cervix: A feasibility study
- (2013) Tarrik Zaid et al. GYNECOLOGIC ONCOLOGY
- Mining Online Social Network Data for Biomedical Research: A Comparison of Clinicians’ and Patients’ Perceptions About Amyotrophic Lateral Sclerosis Treatments
- (2012) Carlos Nakamura et al. JOURNAL OF MEDICAL INTERNET RESEARCH
- Open Drug Discovery Teams: A Chemistry Mobile App for Collaboration
- (2012) Sean Ekins et al. Molecular Informatics
- The Experience of Families With Children With Trisomy 13 and 18 in Social Networks
- (2012) A. Janvier et al. PEDIATRICS
- Perception of xeroderma pigmentosum support group members of xeroderma pigmentosum lifestyle impact
- (2012) Danielle M. Hawkins et al. PHOTODERMATOLOGY PHOTOIMMUNOLOGY & PHOTOMEDICINE
- Patient-reported Outcomes as a Source of Evidence in Off-Label Prescribing: Analysis of Data From PatientsLikeMe
- (2011) Jeana Frost et al. JOURNAL OF MEDICAL INTERNET RESEARCH
- Spontaneous Coronary Artery Dissection: A Disease-Specific, Social Networking Community-Initiated Study
- (2011) Marysia S. Tweet et al. MAYO CLINIC PROCEEDINGS
- Sharing Health Data for Better Outcomes on PatientsLikeMe
- (2010) Paul Wicks et al. JOURNAL OF MEDICAL INTERNET RESEARCH
- Phenotypic delineation of Emanuel syndrome (supernumerary derivative 22 syndrome): Clinical features of 63 individuals
- (2009) Melissa T. Carter et al. AMERICAN JOURNAL OF MEDICAL GENETICS PART A
- Pathological gambling amongst Parkinson's disease and ALS patients in an online community (PatientsLikeMe.com)
- (2009) Paul Wicks et al. MOVEMENT DISORDERS
- Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data
- (2008) Jeana H Frost et al. JOURNAL OF MEDICAL INTERNET RESEARCH
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