Published on in Vol 5, No 3 (2021): March

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/22695, first published .
Global Collaborative Social Network (Share4Rare) to Promote Citizen Science in Rare Disease Research: Platform Development Study

Global Collaborative Social Network (Share4Rare) to Promote Citizen Science in Rare Disease Research: Platform Development Study

Global Collaborative Social Network (Share4Rare) to Promote Citizen Science in Rare Disease Research: Platform Development Study

Journals

  1. Denton N, Mulberg A, Molloy M, Charleston S, Fajgenbaum D, Marsh E, Howard P. Sharing is caring: a call for a new era of rare disease research and development. Orphanet Journal of Rare Diseases 2022;17(1) View
  2. Neff M, Storf H, Vasseur J, Scheidt J, Zerr T, Khouri A, Schaaf J. Identifying project topics and requirements in a citizen science project in rare diseases: a participative study. Orphanet Journal of Rare Diseases 2022;17(1) View
  3. Antoniadou V, Hadjipanayis A. Co-constructing effective collective intelligence networks in rare diseases: a mixed method approach to identify the parameters that matter for patients, professionals and policy-makers, piloted in Cyprus. Orphanet Journal of Rare Diseases 2023;18(1) View
  4. Nevin S, McGill B, Kelada L, Hilton G, Maack M, Elvidge K, Farrar M, Baynam G, Katz N, Donovan L, Grattan S, Signorelli C, Bhattacharya K, Nunn K, Wakefield C. The psychosocial impact of childhood dementia on children and their parents: a systematic review. Orphanet Journal of Rare Diseases 2023;18(1) View

Books/Policy Documents

  1. Biz C, Bragazzi N. Big Data Analytics for Healthcare. View