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 the Sarcoma Inquiry Network (SIN)
In late 2015, Rapid Science received generous support from Bayer, EMD Serono, and Janssen Pharmaceuticals to develop the Sarcoma Inquiry Network — a repository of patient-level sarcoma data with groups of stakeholders contributing, discussing, and analyzing the data. This pilot project, with an international team comprising the editorial board (see below), will test the practical utility of the the following products and services, as a means of developing faster cures:
- A clearinghouse of anonymized, patient-level case reports, focused on genomic data and clinical notes on pathology, treatments, outcomes, and side effects
- An ontologically informed search engine to find outcome matches across histologies, mutations, and treatments
- An international network of sarcoma experts to discuss and analyze exceptional responders
- The ability for patients and professionals to form private groups focused on subtypes and other special interests
- A publishing process to rapidly peer review and update submitted cases
- Wide dissemination of cases and analyses of the current evidence in an open access journal, with practical implications for patients
- Intuitive online tools for annotating, revising, and updating content, both pre- and post-publication
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. 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 Inquiry Network Editorial Board (as of April 2016)
- George Demetri (Chief Editor), MD, Dana Farber Cancer Institute
- Jean-Yves Blay (Chief Editor), 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 is launching soon! Sign up to be notified when we go live.
“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