A Peer-Reviewed, Open Access Database
Genomics is a powerful tool for mapping tumor progression/evolution with great precision in individuals. Collecting these “N of 1” cases into a common database will help identify common patterns and enable more robust conclusions about cancer diagnosis and progression.
— A. Rose Brannon & Charles L. Sawyers
Announcing Sarcoma Central
In late 2015, Rapid Science received generous support from Bayer, EMD Serono, and Janssen Pharmaceuticals to begin the development of Sarcoma Central — a community of healthcare professionals and researchers committed to contributing patient-level data and content for discussion in open and closed groups. This pilot project, with an international team of founding members (see below), was launched August 2016 and will test the practical utility of the the following products and services:
- Templates to submit anonymized, patient-level data combining diagnostic (e.g., omics) and clinical information relevant to outcomes and other topics that participants would like to discuss
- An ontologically informed search engine to find outcome matches across histologies, mutations, and treatments
- An international network of sarcoma experts discussing exceptional responders and other issues related to drug discovery
- A platform for validated professionals to post and initiate threaded discussions on all content types, topics, and formats, including cases, documents, slides, and the latest published evidence
- The ability to form open and closed groups on the fly in secure, permission-based forums, focused on subtypes, clinical trials, grant proposals, and topics of special interest such as immunotherapy and combination therapies
- Tools for updating cases based on patient observation and progression, or to provide more complete details
- Tools for team authoring, annotating, versioning and peer reviewing documents
- A preprint and publishing platform for release of cases, negative data, and insights to an open access audience
Why Case Studies Matter in Precision Oncology: Tumor Heterogeneity
The clinical aspects of modern oncology are becoming ever more complex. This is an inevitable outcome of the new era of precision medicine, where patients are increasingly treated with targeted or immunotherapies, which will eventually number in hundreds, compared with the relatively small number of today’s broad-spectrum chemotherapy regiments.
How to keep an oncologist abreast of the new developments and findings that bear light on which drugs to use in which molecular context? The relative efficacy of new drugs is initially assessed in randomized clinical trials. But the patient population reflected in trials is a relatively small and highly selective sampling of real-world afflicted individuals; to compound this problem, N of 1 studies and full case reports are rarely published because they are not sufficiently “high impact.” Given our new understanding of the heterogeneity of tumors even within a given histology or subtype, and the number of treatments and potential combinations growing at an unprecedented rate, there is no possibility of gaining a full understanding of pathways and drug efficacy through clinical trial results alone.
What is needed is a searchable database that contains information on the genetic alterations in tumors of individual patients, treatments received, and outcomes; also, where relevant and available, the likely mechanisms of resistance (by sequencing and analysis of tumors that recur).
With time, as the collection grows, it will be possible to compare outcomes relative to genetic characteristics for a variety of tumors, discern the efficacy of the treatments, and connect this to the presence or absence of other contributing mutations (as well as to clinicopathological characteristics of tumors). Thus, by finding matches in mutations, treatments, and outcomes, across all tumor types, the database transforms individual anecdotes into the sort of evidence that previously only randomized controlled trials could provide.
Sarcoma Central Founding Members
- George Demetri, MD, Dana Farber Cancer Institute
- Jean-Yves Blay), MD, PhD Cancéropôle Lyon Rhône-Alpes and University Lyon
- Hisham Atef, MD, PhD, Cairo University, Egypt
- Jayesh Desai, MD, Royal Melbourne Hospital, Australia
- Hans Gelderblom, MD, PhD, Leiden University Medical Center, The Hague
- Ian Judson, MD, PhD, The Institute of Cancer Research, London
- Akira Kawai, MD, National Cancer Center Hospital, Tokyo
- Robert Maki, MD, PhD, Mt. Sinai Hospital, New York
- Iwona Lugowska, MD, PhD, Maria Sklodowska Curie Memorial Cancer Centre, Warsaw
- Axel Le Cesne, MD, Institut Gustave Roussy, Villejuif Cedex, France
- Margaret von Mehren, MD, Fox-Chase Cancer Center, Philadelphia
- Richard Quek, MD, National Cancer Centre, Singapore
- Piotr Rutkowski, MD, PhD, Sklodowska-Curie Memorial Cancer Center and Institute of Oncology, Warsaw
- Gary Schwartz, MD, PhD, New York-Presbyterian/Columbia University Medical Center
- Silvia Staccioti, MD, Fondazione IRCCS Istituto Nazionale Tumori, Milan
- David Thomas, MD, PhD, Garvan Institute of Medical Research, Sydney, Australia
- Claudia Valverde, MD, PhD, Hospital Vall d’Hebrón, Barcelona
- Winette van der Graaf, MD, PhD, The Institute of Cancer Research, London
Our sarcoma pilot has launched! If you are a sarcoma researcher or healthcare provider, register at sarcoma.rapidscience.org.
If you are interested in forming a community on the Rapid Science platform, contact us below for more information:
“N of 1” case reports in the era of whole-genome sequencing. Journal of Clinical Investigation (Brannon AR, Sawyers, CL)
Lessons from the cancer genome. Cell (Garraway LA, Lander ES)
Cancer genome landscapes. Science (Vogelstein B, Papadopoulos N, et al.)
Designing transformative clinical trials in the cancer genome era. Journal of Clinical Oncology (Sleijfer S, Bogaerts J, Siu LL)
Clinical analysis and interpretation of cancer genome data. Journal of Clinical Oncology (Van Allen EM, Wagle N, Levy MA)
Cases Database: Filter and search patient demographics, clinical characteristics, and publication information. BioMed Central