While Clinical Practice Guidelines and Guides for Patients do not yet exist for all types of rare cancers, the following links may be of help when looking for advice:
- ESMO Clinical Practice Guidelines for professionals: The European Society for Medical Oncology (ESMO) Clinical Practice Guidelines (CPG) are intended to provide the user with a set of recommendations for the best standards of cancer care, based on the findings of evidence-based medicine. Each CPG includes information on the incidence of the malignancy, diagnostic criteria, staging of disease and risk assessment, treatment plans and follow-up. The CPG are designed to help oncologists deliver an appropriate quality of care to their patients.
- Guides for Patients based on the ESMO Clinical Practice Guidelines: Guides for Patients are designed to assist patients, their relatives and caregivers to better understand the nature of different types of cancer and evaluate the best available treatment choices. Sharing some common goals in their mission statement regarding patient education and knowledge dissemination, the European Society for Medical Oncology (ESMO) and the non-profit organisation Reliable Cancer Therapies, have produced Guides for Patients to assist patients in structuring and absorbing the complex nature of information on cancer and evidence-based treatments. Guides for Patients are available in English, Dutch, French and Spanish.
- NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for professionals (USA): The National Comprehensive Cancer Network® (NCCN®) is an alliance of 21 leading cancer centres in the United States, working together to develop treatment guidelines for most cancers, and dedicated to research that improves the quality, effectiveness, and efficiency of cancer care. The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) document evidence-based, consensus-driven management to ensure that all patients receive preventive, diagnostic, treatment, and supportive services that are most likely to lead to optimal outcomes.
- NCCN Guidelines for Patients™ (USA): The National Comprehensive Cancer Network® (NCCN®) Guidelines for Patients™ is an educational tool for patients and oncology professionals. They are patient-friendly versions of the NCCN Guidelines for professionals, meant to provide state of the art cancer treatment information in easy-to-understand language, thus helping patients with cancer speak with their treating oncologist about their best treatment options
- Recommendations for the management of several cancers in children and young adults for professionals (USA): Produced with a grant from the American Cancer Society, a special free-access supplement of the Journal of Pediatric Hematology/Oncology provides recommendations for the management of several cancers in children and young adults - including thyroid carcinoma, pancreatoblastoma, melanomas, ovarian and testicular sex cord-stromal tumours, neuroendocrine tumours, gastrointestinal stromal tumours, desmoplastic small round-cell tumours, and colorectal carcinoma.