About Resources Listed in GeneReviews

Publication Details

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GeneReviews Resources are identified, evaluated, and selected by staff.

  • Consumer health-oriented organizations included in GeneReviews:
    • Provide information/services to individuals/families with heritable diseases.
    • Have a standing medical/scientific advisory board of health care and/or research professionals, or another mechanism in place for medical/scientific review by health care and/or research professionals.
    • Have a regional, national, or international base.
    • Do not intentionally include information about specific clinical, educational, or research facilities.
    • Are in English or provide an English version.
    • Are available at no cost.
  • Registries included in GeneReviews:
    • Have as their primary purpose improving the medical care of patients or increasing scientific/medical knowledge about the disease.
    • Have a medical/scientific advisory board or other mechanism for medical scientific review.
    • Are not lists of clinical or research facilities.
    • May be affiliated with or sponsored by a clinical/research facility.
    • Allow researchers fulfilling registry criteria to access registry data regardless of their affiliation (or lack thereof) with the sponsoring institution.

GeneReviews does not assume responsibility for information provided by the resources included. Lists are not all inclusive.