Disease Naming Workshop
| Date | Time (ET) | Location (hybrid event) |
|---|---|---|
| August 15-16, 2022 | 9am - 5pm | Johns Hopkins University, Baltimore, MD |
Background & Intended Audience
The organizing committee, as members of Mondo, ClinGen, OMIM, and the WHO ICD Medical Scientific Advisory Committee, are most interested in joining forces to come up with broad, community level strategies for disease nomenclature.
This workshop is intended for anyone who participates in the naming of diseases and those who contribute to the development of the Mondo disease ontology. This Includes, but is not limited to, members of the ClinGen, OMIM, GARD, WHO, NIH, and Monarch Initiative communities. All are welcome.
Agenda
The workshop will consist of 3 introductory talks on the ICD-11 serialization and nomenclature work, the latest ClinGen Disease Naming Guidelines, and the Current Mondo process for creating, and managing disease names. The remaining time, over the two days of the workshop, will be used to foster discussions over examples of the most challenging issues, and define our approach to achieve community-level agreement on disease naming governance.
Monday, August 15, 2022
| Time (ET) | Sesion | Topic | Speaker |
|---|---|---|---|
| 9:00am | Welcome Message | Organizing Committee | |
| 9:15am | Introduction | ICD-11 Serialization and Nomenclature | Christopher Chute |
| 9:45am | Introduction | ClinGen Disease Naming Preliminary guidance | Cortney Thaxton |
| 10:15 am | Break | ||
| 10:45 am | Introduction | Creating and managing disease names in Mondo | Melissa Haendel |
| 11:15 am | Introduction | Wishlisting the ‘ideal’ disease naming strategy | Monica Munoz-Torres |
| 12:00 pm | Lunch | ||
| 1:30 - 5 pm | Discussions | Work together through example issues | Everyone |
Tuesday, August 16, 2022
| Time (ET) | Sesion | Topic | Speaker |
|---|---|---|---|
| 9:00 am - 12 pm | Discussions | Work together through example issues | Everyone |
| 1:30 pm - 5 pm | Planning next steps | Outlining community-wide governance for disease naming | Everyone |
Registration
A $50 registration fee will be collected on site for those attending in person. This fee is reimbursable.
Financial support
With funds from a conference-centric grant from NIH BD2K, we plan to cover the costs of flights, hotels, and per diem for some of our participants. We encourage and welcome our junior scientists and trainees to reach out to us with inquiries about covering your travel costs.
Workshop organizers
- Monica Munoz-Torres, University of Colorado Anschutz Medical Campus
- Melissa Haendel, University of Colorado Anschutz Medical Campus
- Christopher Chute, Johns Hopkins University
- Ada Hamosh, Johns Hopkins University
- Chrstopher Mungall, Lawrence Berkeley National Laboratory
- Peter Robinson, Jackson Laboratory for Genomic Medicine
- Courtney Thaxton, ClinGen
- Sarah Gehrke, University of Colorado Anschutz Medical Campus
- Sophia Stanley, Johns Hopkins University
- Tricia Francis, Johns Hopkins University
- Nicole Vasilevsky, University of Colorado Anschutz Medical Campus
COVID-19 policy
Our workshop will be held at Johns Hopkins University, and we will observe their public health guidelines. Please check the latest updates at https://covidinfo.jhu.edu. Please note that, given ever changing conditions of the virus and its spread, JHU guidelines on COVID-19 may change at any time.
Code of Conduct
Please read our Code of Conduct prior to attending the workshop, available here.
Funding
This workshop is supported by an NIH BD2K conference grant “Forums for Integrative phenomics” to Drs. Melissa Haendel and Peter Robinson: U13 CA221044.