PARTNER WITH US

Industry

Providing access to conduct Clinical Trials.

Partner with us!

If you are a biopharmaceutical company, our diverse network of clinical experts, research coordinators, and clinical sites, including those globally, will provide access to conduct clinical trials.

 

Connect with Clinical Advisors

“It’s those sort of things that will come out of your analysis of the survey work that you did today that will really make a difference for helping drug developers, or device developers or biologics or gene therapy developers understand what they should be measuring and how to address this population, meet you where you are for what you want in the future.

So, at least from the FDA, I appreciate this meeting. I think it was very successful. You should all be very proud of the work you did today.”

Lucas Kempf, MD, PLLC

Acting Associate Director, Rare Disease Program at FDA, Office of New Drugs, CDER, FD

Resources

HNF has developed resources to support our Therapeutic Research Accelerated Discovery (TRIAD) partners, which include academic and data scientists, industry leaders, Health Care Providers & our CMT Centers of Excellence, and more.

Visit TRIAD

Access HNF’s Patient Registry:

Advance your knowledge of CMT and other inherited neuropathies by accessing HNF’s Global Registry, GRIN.

GRIN CMT-specific surveys are complimented by NIH-funded ClinGen  “head to toe” surveys to provide a robust dataset for analysis and better understanding of the disease burden and patients’ perspective on treatments.

 

Principal Investigator
Allison Moore, HNF’s Founder/CEO

GRIN Registry Coordinator
Joy Aldrich

Submit a research proposal

Email [email protected]

Submit an Application

Apply for a specific study based on CMT subtypes to support your research, clinical trials, or regulatory purposes.

What you can learn from the GRIN natural history study:

  • Genotype / Phenotype
  • Signs & Symptoms
  • Mobility & Function
  • ADL’s
  • Age of Onset
  • Benefit / Risk
  • Epidemiology
  • Demographics
  • EHR
  • Baseline Score (validated CMT and ClinGen Measures)
  • EMG/NCV
  • Longitudinal Data
  • Level of interest in clinical trial participation

Through GRIN, you will have access to:

  • IRB-valid data sets to serve your studies.
  • Consented cohorts of patients for upcoming clinical trials.
  • Patients who are willing to provide blood, skin fibroblasts, etc.
Join GRIN

Customize a GRIN study:

  • Do you need to understand a specific subtype of IN better?
  • Determine if patients will be open to your investigational drug
  • Study results to design your preclinical studies (in-vivo)
  • To support your clinical trial design
  • Identify meaningful outcomes

Connect with our CMT Centers of Excellence!

HNF has 28 Centers of Excellence, including pediatrics. Many are experienced and/or qualified to run clinical trials. Of the 28 sites, 24 of them have conducted either phase II or Phase III in CMT. Many of the sites have experienced research coordinators with multidisciplinary medical professionals that are trained in conducting the CMTES, CMTNSv2, ONLS, CMTPedS and more!

Our CMT patient community is counting on you! It’s not too early to engage with us.

*Projects are open to researchers, clinicians and industry globally.

Centers of Excellence
Connect with HNF