genetic_home_reference_sow_Final.pdf

STATEMENT OF WORK

Professional Support Services to Enhance the Content of Genetics Home Reference

August 4, 2017

A. Background Information

Genetics Home Reference, a program of the National Library of Medicine at the National Institutes of

Health, is an online resource that provides reliable, consumer-friendly information about the effects of genetic variations on human health. The Genetics Home Reference website (https://ghr.nlm.nih.gov/) contains plain-language summaries of more than 1,150 genetic conditions, more than 1,350 genes, all of the human chromosomes, and illustrated background information about the fundamentals of human genetics. Genetics Home Reference also offers links to other trusted material on the web that provides foundational information to users.

Genetics Home Reference is one of the Library’s most relied-upon resources, with a 2016 average of more than 3.3 million page views and 1.7 million users per month. With this high public visibility, timely review of existing topics is an essential element for maintaining an accurate and useful website. With the huge explosion of genetic information and its clinical relevance, Genetics Home Reference could enhance its public offerings through the skills and resources of an organization with a broad membership of genetics support and advocacy groups. The professional services to be provided will increase the efficiency of content updates for the Genetics Home Reference website.

The services provided through this contract will build on existing processes, templates, and documentation established and refined over the past 6 years (see Appendices 1 and 2). The deliverables created by this contract will include “Alerts” from the relevant disease advocacy community, requested and tracked by the contractor. These Alerts will help Genetics Home Reference keep its disease-specific information for the public up-to-date.

B. Purpose and Objectives

The purpose of this contract is to provide resources for Genetics Home Reference to enhance the depth and timeliness of its current content. Tangible deliverables of this contract consist of "Alerts" for updates to existing materials as detailed in Required Tasks, below.

C. Contractor Requirements

The Genetics Home Reference project of the Lister Hill Center requires professional support services from a nationwide patient advocacy organization that has extensive experience with rare and common genetic https://ghr.nlm.nih.gov/ disorders. The professional services needed require an organization with access to support and advocacy groups representing a broad spectrum of genetic disorders and a proven track record of creating and disseminating educational materials about genetics and genetic disorders to the public. The organization will involve their member groups to alert Genetics Home Reference staff to specific, mission-critical information about conditions, genes, and other content currently available on the Genetics Home

Reference website via an existing process and a protocol-specific template. These professional services will build on previous work that has been done to reach out to genetic and rare disease advocacy groups for feedback on existing Genetics Home Reference content.

D. Tasks to be Performed

Task : Provide Genetics Home Reference staff with” alerts” when important new information is available about conditions, genes, and other information currently available on the Genetics Home

Reference website to help project staff keep the site content up-to-date.

Contractor staff will solicit, coordinate, and prepare information obtained from disorder-specific member groups and those groups’ scientific advisory boards using previously developed processes and template documents. Contractor will assess the accuracy and applicability of Alerts and submit them to project staff using the established work flow process (Appendix 1) and available template (Appendix 2).

The contractor will contact member groups regularly to request new Alerts and will follow up with member groups to maximize participation and ensure Alerts are received in a timely fashion. Details of these contacts and follow-ups will be tracked via spreadsheet or similar mechanism as detailed below under Deliverables. The contactor will ensure that each part of the task is completed on time and is of high quality.

E. Period of Performance

The base period of performance for this contract shall be for 12-months from September 19, 2017 through September 18, 2018 with two (2) successive 12-month Option Periods:

Option Period 1: September 19, 2018 through September 18, 2019

Option Period 2: September 19, 2019 through September 18, 2020

F. Place of Performance

The contractor will perform work at the vendor site.

G. Level of Effort

Labor Categories

The following is a sample of positions and experience levels that would be appropriate for performance of this requirement, but not limited to. The vendor may propose other labor categories and experience levels, if they would contribute to a better more efficient solution;

however, the vendor must demonstrate that the personnel and proposed level of effort/total labor hours meet the Government’s requirement.

The NIH reserves the right during the term of this contract to unilaterally increase or decrease the total level of effort by up to 10% without adjustment to the contract labor rates including overhead and profit.

The government estimates that the following average level of effort/average total labor hours will be needed from the contractor to perform the required service:

Base Year

Labor Category Minimum Hours Maximum

Hours

Optional Tasks-

Minimum Hours

Optional Tasks-

Maximum Hours

Senior Manager 12

Alert Coordinator 416

Option Year 1

Optional Tasks-

Minimum Hours

Optional Tasks-

Maximum Hours

Option Year 2

Optional Tasks-

Minimum Hours

Optional Tasks-

Maximum Hours

Senior Manager:

Educational requirements: Master’s degree or PhD in genetics, genetic counseling, or related field or equivalent

Experience/skills:

• Familiarity with and access to a broad range of genetics support/advocacy groups.

• Effective management of outreach staff.

Alert Coordinator:

Educational requirements: Master’s degree or PhD in genetics, genetic counseling, or related field.

Experience/skills:

• Familiarity with and access to a broad range of genetics support/advocacy groups.

• Experience with outreach to group points of contact via e-mail, phone, etc.

• Ability to organize initial contacts and follow-ups with multiple support/advocacy groups.

• Ability to create and maintain spreadsheets to track tasks.

The tasks outlined above shall require contractors to demonstrate skills or expertise in an area or areas of education and/or expertise. The contractors shall demonstrate their areas of expertise in the labor categories indicated in the Labor Chart provided above.

H. Travel and Transportation

No travel or transportation costs are anticipated.

I. Transition Plan

To ensure an orderly transition of contract-related materials to a successor contractor, the following should be accomplished:

• Sixty days prior to completion of this contract the contractor shall have developed a written transition plan, subject to Project Officer approval, to ensure the orderly transfer of all or part of this project to a designated Contractor, if other than the incumbent.

• The incumbent shall transfer any equipment, data, back-up tapes, disk drives and software to the successor contractor per procedures designated by the Project Officer. Complete documentation shall accompany all software. Any software and documentation developed for these systems shall be the property of the government.

• The incumbent shall provide the new contractor with all acquired publications, reprints, abstracts and any other documents and files necessary for the continuation of this contract to the new contractor.

J. Contract Start-Up

The contractor shall present a plan for the start-up of this new contract and the transition of activities and materials, as appropriate, from the incumbent to the new contractor. The contractor shall acknowledge and incorporate the likelihood that different existing tasks are complex and may require significantly different types of transition as well as length of time for such transition. Due to the critical nature of certain tasks, there may be a need to coordinate with the incumbent contractor for an extended period to ensure continuity of services.

The contractor shall describe an approach to maintaining effective communication, coordination, and liaison between the Government and the Contractor and between the contractors themselves, during the transition period. The plan should also include the transfer of historical materials that shall be maintained by the current contractor. The plan should discuss how the contractor plans to accomplish this transition while minimizing the disruption of Government Services.

L. Deliverables and Reports

Contractor will provide:

• Electronic versions of completed documents received from member groups, to include both solicited and spontaneous Alerts and related feedback.

• A spreadsheet or other mechanism for tracking contacts with member groups, including a detailed record of contacts made, Alerts received, and follow-up performed. Contractor will keep this spreadsheet up-to-date, make it regularly accessible to Genetics Home Reference staff, and provide an electronic copy to project staff at the end of each contract year.

• Monthly and annual progress reports detailing the major activities of the project during the reporting period and activities planned for subsequent periods. These reports will be sent electronically to the Genetics Home Reference federal point of contact.

Throughout the period of performance, on a semi-annual basis, the contract will be assessed on the following metrics:

• Number of member groups the contractor contacted to elicit Alerts. Based on work done in previous years, the number of member groups contacted should average at least 12 per month.

• Amount of follow-up (e.g. e-mails, phone calls) the contractor performed to request the participation of previously unresponsive member groups and to remind member groups who agreed to participate.

• Number of Alerts and related correspondence (e.g. forms, comments) received by project staff from the contractor, which staff evaluates as useful to the mission of the project. Based on work done in previous years, the number of Alerts received should average about 70 per year.

• Contractor’s participation in conference calls and face-to-face meetings, and delivery of tracking spreadsheets and monthly and annual reports to Genetics Home Reference staff.

Genetics Home Reference staff will consider additional metrics in the contract review, including assessment of Genetics Home reference site traffic, evaluations of the condition-, gene-, or chromosome-specific information provided by the contractor, and the impact of the contract deliverables on Genetics

Home Reference workflow and product quality.

M. Inspection and Acceptance

All deliverables produced by the Contractor shall be reviewed and approved for acceptance by the

COR upon delivery by the contractor.

Appendix 1: Outline of Genetics Home Reference Alert work flow process

1.) Contractor solicits Alerts from member advocacy groups/organizations, following up as appropriate to maximize participation.

2.) For each Alert received, Contractor sends the following information to Genetics Home Reference staff via e-mail:

o Date of Alert o Name of advocacy group or organization o Name of contact person at advocacy group or organization o Subject of Alert: condition name, gene symbol, and/or chromosome o Text of Alert (free text content of suggestion for update) o Related PubMed citation(s) o A tracking number, for Contractor’s convenience, in case project staff splits the alert into pieces

3.) Genetics Home Reference staff receives Alert from Contractor, reviews and acts on Alert as appropriate.

4.) Project staff reports the status of Alerts (open, on hold, or closed) to Contractor weekly via e-mail.

5.) Contractor responds to advocacy group or organization about the status of their Alert.

6.) Contractor may provide Genetics Home Reference staff relevant feedback and comments from advocacy groups (informal).

Appendix 2: Template for Requesting an update to Genetics Home Reference Condition or Gene Summary

Please use this form to submit suggested updates for condition or gene entries already available in Genetics Home

Reference. Please fill out all of the fields below. You will be contacted after your submission has been reviewed.

If you have questions while filling out this form, please contact [contractor contact information].

Date of alert: ________________

Advocacy organization name: _______________________________

Name of person supplying information: _______________________________

Your email: _______________________________

Your phone: _______________________________

Condition/Gene Summary URL: ______________________________________

Date you looked at the Genetics Home Reference condition/gene summary: _________________

Alert category (choose all that apply):

□ New clinical criteria associated with a condition

□ Discovery of new gene(s) or chromosome(s) associated with a condition

□ Discovery of new or updated function for a gene

□ Updated estimate of condition incidence/prevalence

□ New support group or other resource that meets the Genetics Home Reference Selection Criteria but is not yet linked in a particular topic

□ New naming or lumping/splitting (e.g. into subtypes)

□ Critical review article or seminal study published

Note: Please do not send Alerts regarding findings from animal studies, new diagnostic tests, or treatment modalities, as this information is not covered on Genetics Home Reference. Additionally, please do not send Alerts for new mutations in genes that are already part of an existing gene/condition relationship on Genetics Home

Reference.

Short description of update (one sentence):

Longer description of update (no more than 1 paragraph; please include official gene symbols from HGNC when describing genes):

Please list citations (including PubMed IDs) supporting the update described above.

http://ghr.nlm.nih.gov/ http://ghr.nlm.nih.gov/ http://ghr.nlm.nih.gov/ghr/page/Disclaimers http://www.genenames.org/