PNRC New Disorders from
APHL is seeking applicants to serve as Peer Network Resource Centers (PNRC) to provide technical assistance and/or first- and/or second- tier newborn screening for Pompe Disease, Mucopolysaccharidosis I (MPS-1) and X-linked Adrenoleukodystrophy (x-ALD). APHL anticipates that (1) each PNRC would receive up to $60,000 per year for the services it renders in support of the program and (2) the program will be funded for a two-year project period.
Qualified applicants must demonstrate full implementation of first- and/or second- tier newborn dried bloodspot screening for at least one of the three newest disorders (Pompe, MPS-1, x-ALD) added to the Recommended Uniform Screening Panel (RUSP) by March 1, 2017. In addition, successful applicants must have a comprehensive approach to the laboratory testing, reporting, follow-up, and referral to clinical networks such that they can provide short-term to long-term technical assistance in any of these areas.
Scope of Work
NBS Programs or their affiliated or associated laboratories with the ability to perform at least two of the following three activities are eligible to apply:
- Serve as content area experts and provide technical assistance to state newborn screening programs on the implementation of laboratory techniques, follow-up procedures, and other activities specifically associated with the implementation of screening for Pompe and/or MPS-1 and/or x-ALD. This may include hosting onsite visits by other newborn screening programs to receive training and mentorship on laboratory practices and/or follow-up processes associated with implementation of screening for at least one of the new conditions.
- Offer first tier screening for the new disorders for other state newborn screening programs, demonstrating capacity to increase the number of specimens screened for the selected disorder(s). Screening for other programs could be short-term, in order to facilitate earlier testing by a state program, or long-term with the intent of providing screening results for a given disorder on an ongoing basis. First-tier screening in a Peer Network Resource Laboratory may be selected on a short-term basis by state programs who are unable to complete the laboratory validation and set-up but are otherwise ready to implement the screen. Covering costs associated with a Peer Network Resource Laboratory performing laboratory screening for another program will be the responsibility of the requesting program. Funding provided through this award mechanism is intended to support the development of the infrastructure to allow additional testing.
- Offer second tier/confirmatory testing (molecular/next-generation sequencing) following a positive first-tier newborn screen to other newborn screening programs. Currently, the low volume of second-tier screening in newborn screening programs makes it impractical to establish confirmatory (next generation sequencing) capabilities in all laboratories. Covering costs associated with a Peer Network Resource Laboratory performing laboratory screening for another program will be the responsibility of the requesting program. Funding provided through this award mechanism is intended to support the development of the infrastructure to allow additional testing.
October 11, 2016 – RFP Issued
October 18, 2016 – Technical Assistance Webinar at 3:00 pm ET
October 19, 2016 – Letter of intent due by 5:00 pm ET to APHL
November 18, 2016 – RFP responses due by 5:00 pm ET to APHL
December 9, 2016 – Awardees notified
February 1, 2016 – Contracts ratified between APHL and awardees
Applications have been reviewed. Applicants will be contacted individually. Please feel free to contact Sikha Singh at Sikha.Singh@aphl.org or 240.485.2726 with any questions.
Request for Proposals Materials
Request for Proposals (RFP) provides details on how to complete this RFP. This RFP contains information on evaluation criteria.
Documents for Review and Completion
Request for Proposals
Point of Contact
If you have any questions please contact Sikha Singh at
Sikha.Singh@aphl.org for assistance.