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.
Publication Details
Publication History
Initial Posting: April 5, 2007; Last Revision: March 9, 2023.
Copyright
GeneReviews® chapters are owned by the University of Washington. Permission is hereby granted to reproduce, distribute, and translate copies of content materials for noncommercial research purposes only, provided that (i) credit for source (http://www.genereviews.org/) and copyright (© 1993-2024 University of Washington) are included with each copy; (ii) a link to the original material is provided whenever the material is published elsewhere on the Web; and (iii) reproducers, distributors, and/or translators comply with the GeneReviews® Copyright Notice and Usage Disclaimer. No further modifications are allowed. For clarity, excerpts of GeneReviews chapters for use in lab reports and clinic notes are a permitted use.
For more information, see the GeneReviews® Copyright Notice and Usage Disclaimer.
For questions regarding permissions or whether a specified use is allowed, contact: ude.wu@tssamda.
Publisher
University of Washington, Seattle, Seattle (WA)
NLM Citation
Adam MP, Feldman J, Mirzaa GM, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2024. About Resources Listed in GeneReviews. 2007 Apr 5 [Updated 2023 Mar 9].