TY - JOUR
T1 - Peripheral Neuropathy Research Registry
T2 - A prospective cohort
AU - PNRR Study Group
AU - Thomas, Simone
AU - Ajroud-Driss, Senda
AU - Dimachkie, Mazen M.
AU - Gibbons, Christopher
AU - Freeman, Roy
AU - Simpson, David M.
AU - Singleton, J. Robinson
AU - Smith, A. Gordon
AU - Höke, Ahmet
N1 - Funding Information:
The Peripheral Neuropathy Research Registry (PNRR) is a prospective cohort of peripheral neuropathy (PN) patients focused on idiopathic axonal peripheral neuropathy. Patients with diabetic, human immunodeficiency virus-, and chemotherapy-induced peripheral neuropathies are enrolled as comparison groups. The PNRR is a multi-center collaboration initiated and funded by the Foundation for Peripheral Neuropathy (FPN) with the objective to recruit a well characterized cohort of patients with different phenotypes and symptoms in each diagnostic category, and to advance research through development of biomarkers and identification of previously unknown causes of PN. The overall goal of the initiative is to find disease-altering treatments and better symptom relief for patients. We present the study design, types of data collected, and characteristics of the first 1150 patients enrolled. We also discuss ongoing analyses on this dataset, including untargeted-omics methodologies.
Funding Information:
information Foundation for Peripheral NeuropathyWe want to thank the Foundation for Peripheral Neuropathy for sponsoring this research project, and the Jack Miller Family Foundation for their instrumental role for setting up the Foundation and their financial support for the PNRR study. We also want to thank the examining physicians and study coordinators at the consortium member sites for their efforts to capture the required information and entering it into the database, the patients for their permission to use their medical information for research, taking the time to fill out the standardized questionnaire, and to allow us to collect a blood sample and last but not least, the personnel at the University of Indiana who are managing the database and biospecimen repository. PNRR Study Group Members: Johns Hopkins University School of Medicine (Vinay Chaudhry, David Cornblath, Mohamed Khoshnoodi, Thomas Lloyd, Brett Morrison, Michael Polydefkis, Ricardo Roda, Charlotte Sumner), University of Utah (Summer Gibson, Kelsey Barrell, Ligia Onofrei).
Publisher Copyright:
© 2019 Peripheral Nerve Society
PY - 2019/3
Y1 - 2019/3
N2 - The Peripheral Neuropathy Research Registry (PNRR) is a prospective cohort of peripheral neuropathy (PN) patients focused on idiopathic axonal peripheral neuropathy. Patients with diabetic, human immunodeficiency virus-, and chemotherapy-induced peripheral neuropathies are enrolled as comparison groups. The PNRR is a multi-center collaboration initiated and funded by the Foundation for Peripheral Neuropathy (FPN) with the objective to recruit a well characterized cohort of patients with different phenotypes and symptoms in each diagnostic category, and to advance research through development of biomarkers and identification of previously unknown causes of PN. The overall goal of the initiative is to find disease-altering treatments and better symptom relief for patients. We present the study design, types of data collected, and characteristics of the first 1150 patients enrolled. We also discuss ongoing analyses on this dataset, including untargeted-omics methodologies.
AB - The Peripheral Neuropathy Research Registry (PNRR) is a prospective cohort of peripheral neuropathy (PN) patients focused on idiopathic axonal peripheral neuropathy. Patients with diabetic, human immunodeficiency virus-, and chemotherapy-induced peripheral neuropathies are enrolled as comparison groups. The PNRR is a multi-center collaboration initiated and funded by the Foundation for Peripheral Neuropathy (FPN) with the objective to recruit a well characterized cohort of patients with different phenotypes and symptoms in each diagnostic category, and to advance research through development of biomarkers and identification of previously unknown causes of PN. The overall goal of the initiative is to find disease-altering treatments and better symptom relief for patients. We present the study design, types of data collected, and characteristics of the first 1150 patients enrolled. We also discuss ongoing analyses on this dataset, including untargeted-omics methodologies.
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U2 - 10.1111/jns.12301
DO - 10.1111/jns.12301
M3 - Article
C2 - 30629307
AN - SCOPUS:85060775239
SN - 1085-9489
VL - 24
SP - 39
EP - 47
JO - Journal of the Peripheral Nervous System
JF - Journal of the Peripheral Nervous System
IS - 1
ER -
