RARE DISEASES AND OUTCOMES DATABASE
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Inclusion Criteria

​Rare diseases are defined differently by various organizations and nations. In the Orphan Drug Act of 1983, the United States Congress defined a rare disease as a condition that affects fewer than 200,000 people. In the European Union, a rare disease is any disease affecting fewer than 1 in 2,000 people. The European Union, further defines ultra-rare diseases as those affecting 1 in 50,000 people.

We recognize that any threshold set to define rarity is artificial. The goal of the RDOD is to advocate for patients with rare diseases, especially, in cases where very little is known about a disease.
Thus, in order to be eligible for inclusion, a disease must meet the following criteria:
  1. Included in the World Health Organization International Classification of Diseases
  2. Listed as a Rare Disease by either NIH or Orphanet
  3. Incidence <1/100,000
  4. Preference is given to open disease-specific pages for diseases with fewer than 500 reported cases in the literature

​For the Oncology division, tumors must meet the following additional criteria
  1. Included in the World Health Organization Classification of Tumors
        The RARECARE list can assist in determining incidence

Case Report Criteria

We minimize barriers to submission by limiting requirements for the clinical vignette including making the accompanying background and discussion optional. Formatting requirements are minimal. Case reports that are valid will all be accepted and there is minimal fee for submission. Authors may also submit updates to case reports.

Requirements

1) Meet inclusion criteria
2) Well written clinical vignette with pertinent information regarding presentation, diagnostics, treatment, outcomes and complications
3) Background and discussion are welcome but not required
4) Authors must supply full names, credentials and contact information
5) Clinical elements noted in the submission form must be individually submitted
Begin your submission
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