golden retrievers with blurred landscape background

Golden Retriever Lifetime Study Data Commons Data Roadmap

This plan describes what data from the GRLS study is published or will be published soon and how to ask for more data or samples.

If you have any feedback or questions about this roadmap, please contact us.

Overview of GRLS Study Data

The Golden Retriever Lifetime Study (GRLS) data is in a very dynamic moment and this document reflects the data at a point in time. The documentation will be updated regularly. The last update occurred in October 2022. The data has been collected for 10 years and we are still expanding the set of questions we ask researchers (see the list under Data Collected for specific extension of the study).

Starting in 2018 Morris Animal Foundation is pursuing the strategy of sharing that data through the Morris Animal Foundation Data Commons. At this phase in the project we are constantly working to clean more data to prepare it for researchers to analyze. The graph below summarizes the data cleaning process, showing that we have cleaned or are in the process of cleaning 33.4% of the study data. We do not intend to share approximately 9.8% of the study data which is operational in nature and is out of scope for animal health research (e.g. the phone number of the owner). We will clean the remaining 56.9% of the data over time, in the order we believe to be priority or as researchers request that data.

Data Transformation by Status

pie chart explaining data in the table below

 

Data transformation progress:

Year Done Partially done Near term No action planned Pending request Years available
2020 19.8% 9.7% 3.9% 9.8% 56.9% 5
2023 34.9% 9.0% 2.6% 9.7% 43.8% 8

 

Data collected by the study

The following list includes all of the data that the study has collected or generated so far. The amount of data about the project is vast. Not all of this data is immediately available to researchers. We aim to share the most valuable data that can be analyzed with audiences who are able to explore it and create scientific discoveries that improve animal health.

  • Annual questionnaires. This information is always available in the first year. Data for other study years may or may not be present. In a typical year approximately 700 data points are collected from the owner questionnaire and over 200 data points are collected from the veterinarian questionnaire.

  • Clinical pathology lab results from samples taken at annual, biopsy, and necropsy visits.

  • Malignancy Related Questionnaire which is filed by veterinarians for any cancerous malignancy diagnosed in-between annual visits (excluding low-grade mast cell tumors).

  • Where samples were taken we have slides and blocks. The slides will be digitized.

  • Death and Necropsy Questionnaire: occurs at the dog’s death to gather information after the last annual questionnaires, and to gather information about the death and necropsy.

  • Causes of death and all cancer diagnoses are entered into our database with a tiered confidence. All cause of death endpoints, regardless of diagnosis method, biopsies, and necropsies are adjudicated. Each method of diagnosis and adjudications are tracked within the system.

  • Tier 1: Confirmed histology or cytology reviewed by a board-certified pathologist (for lymphoma, flow cytometry and PARR are acceptable)

  • Tier 2: Direct visualization or imaging (MRI, CT, ultrasound, radiographs) reviewed by board-certified specialist without microscopic confirmation (for lymphoma, in-house cytology)

  • Tier 3: Clinical diagnosis only, diagnosis origin unknown

  • The dog’s neuter and spay dates were confirmed by study volunteers with the veterinarian's office as a measure to verify the quality of that data.

  • All of the dogs have been genotyped using Affymetrix Array to perform X pass genotyping as a result of a partnership with the V Foundation.

  • The optional Golden Age extension of the study started in April 2021 and provided the study with the questions from. These are not always present for all dogs enrolled in this extension.

  • LOAD (Liverpool Osteoarthritis in Dogs) owner questionnaire every 6 months.

  • DISHAA (Disorientation Social Interactions Sleep/Wake Cycles, Housesoiling, Learning and Memory Activity Anxiety) owner questionnaire every 6 months.

  • COAST (Canine OsteoArthritis Staging Tool) veterinarian questionnaire every year.

  • The Canine Atopic Dermatitis Research Questionnaire (cAD-RQ) one-time questionnaire was added to the study in May of 2022. Owners with an enrolled dog can take this questionnaire at any point but may choose not to do it.

  • Reference “dictionary tables” that we use as part of the process of cleaning the data to prepare it for researchers.

  • Study operations data and other similar data which we do not intend to share. This includes information like support emails and phone call records.

Tiered data access model

The Foundation seeks to maximize the scientific impact of the study while ensuring its sustainability. Scientific research into the data and turning discoveries into new products or practices requires significant resources. We believe the impact is best achieved by involving commercial, academic, and the broader research community at different phases. Our practice is to give researchers unique access to specific topics to avoid 2 researchers making discoveries in the same area at the same time.

These beliefs and practices are implemented as a series of 4 data access levels:

  • Tier 0 – General Public Open Access: data that is publicly available without registration. We ask that researchers who use this data cite the study, but it is not encumbered by intellectual property limitations or costs to use the data.

  • Tier 1 – Academic Open Access: some data that is out of the initial 1-year embargo period is shared on the MAF Data Commons website to academic researchers. The terms of their use are described in detail at the MAF Data Commons site. The goal is to allow academic researchers to access, study, and do research that results in publications in a suitable journal. However, they should not be able to make a commercial invention or patent without negotiating appropriate licensing terms with the Foundation.

  • Tier 2a – Academic Reviewed Access: academic researchers may apply via the GRLS RFP process to gain access to banked samples or data that is not provided in MAF Data Commons. The terms on publishing, licensing, and commercial use are governed by the RFP process but are generally similar to Tier 1.

  • Tier 2b – Commercial Access: the limitations on this tier are determined on a case-by-case basis through a commercial partnership process that evaluates scientific value and any revenue associated with the project. This process determines the best path forward to ensure high levels of scientific impact and sustainability of the project. For example, platinum founding partners of the project were given unlimited, non-exclusive access to the study data with an embargo period before other partners can be given access to the data.

Requesting access to data

There are 4 different places to request access to data depending on the circumstance. If you are an academic researcher and unsure if the data is available already, see the list below or check the MAF Data Commons itself. That is much faster and easier than the RFP process.

 

Academic researcher

Commercial researcher

Data that is already transformed

Apply to become a user on the MAF Data Commons. If that does not contain the information you need, please contact us.

Submit a Golden Retriever Lifetime Study Partnership Request.

Data that is not yet transformed

Apply for a grant via our Golden Retriever Lifetime Study RFP page.

Submit a Golden Retriever Lifetime Study Partnership Request.

 

 

Detailed data description

All data available under tier 0:

  • The data for the paper Endoparasitism of Golden Retrievers: Prevalence, risk factors, and associated clinicopathologic changes is available in the paper as a CSV or on data.world as a CSV https://data.world/ehales/grls-parasite-study

  • The data for the paper Age at gonadectomy and risk of overweight/obesity and orthopedic injury in a cohort of Golden Retrievers is available as a SAS file to download from the paper’s webpage at https://doi.org/10.1371/journal.pone.0209131

 

In the linked spreadsheet is a table of the fields available from:

  • Owner Annual Questionnaire

  • Veterinarian Annual Questionnaire

  • Golden Age Questionnaires (Owner and Veterinarian)

  • Clinical laboratory results

  • Malignancy Related Questionnaire

  • Owner Itchy Dog Questionnaire

 

View public data dictionary spreadsheet

 

If you have any feedback or questions about this roadmap, please contact us.