Clinical Network & Trials

Collaborative Clinical Research Network in Friedreich’s Ataxia

The Collaborative Clinical Research Network in Friedreich's Ataxia (CCRN in FA) is an international network of clinical research centers that work together to advance treatments and clinical care for individuals with Friedreich's ataxia. The network collaborates with pharmaceutical companies, government agencies and other research centers and the patient community to facilitate clinical research and trials needed to identify new therapies.

The Core Objectives of the Network

At each clinical research center there is a team of researchers, physicians and health care providers dedicated to FA.

The CCRN in FA is funded by the Muscular Dystrophy Association and the Friedreich’s Ataxia Research Alliance.

 

CCRN Contacts and Sites

Network Principal Investigator	Dr. David R. Lynch lynch@mail.med.upenn.edu Children’s Hospital of Philadelphia
Network Coordinator	Jennifer Farmer, MS, CGC jen.farmer@curefa.org 610-246-9017
Data & Clinical Trial Coordination	Dr. Bernard Ravina University of Rochester
DNA Bank & Genetic Studies	Dr. Robert Wilson University of Pennsylvania

Children’s Hospital of Philadelphia, Philadelphia, PA Principal Investigator - Dr. David Lynch Coordinator – Lisa Friedman, friedmanl@email.chop.edu Telephone – 267-426-7538

University of California Los Angeles, Los Angeles, CA Principal Investigator - Dr. Susan Perlman Coordinator – Peter Mao, pmao@mednet.ucla.edu Telephone – 310-794-1225

University of Chicago, Chicago, IL Principal Investigator – Dr. Christopher Gomez Coordinator – Vicki Staszak RN, MS/MBA vstaszak@neurology.bsd.uchicago.edu Telephone – 773-702-5545

Emory University, Atlanta, GA Principal Investigator – Dr. George Wilmot Coordinator – Betty Robinson, bnrobin@emory.edu Telephone - 404-728-4909

University of Minnesota, Minneapolis, MN Principal Investigator - Dr. Khalaf Bushara Coordinator – Diane Hutter, RN, dhutter@umphysicians.umn.edu Telephone - 612-625-2350

University of Iowa, Iowa City, IA Principal Investigator - Dr. Kathy Matthews Coordinator – Carrie Stephan, RN, carrie-stephan@uiowa.edu Telephone – 319-356-2673

University of Rochester, Rochester, NY Principal Investigator - Dr. Bernard Ravina Coordinator - Cheryl Deeley, Cheryl_Deeley@urmc.rochester.edu Telephone - 585-275-7430

University of Texas Medical Branch, Galveston, TX Principal Investigators – Drs. Tetsuo Ashizawa and Sub Subramony Coordinator – Penny Stanton, CCRP, pstanton@utmb.edu Telephone - 409-747-2111

University of South Florida, Tampa, FL Principal Investigator – Dr. Teresa Zesiewicz Coordinator – Kelly Sullivan, MSPH, kbarber@health.usf.edu Telephone – 813-974-5909

The Bruce Lefroy Centre for Genetic Health Research, Murdoch Children’s Research Institute Melbourne, Australia Principal Investigator – Dr. Martin Delatycki Coordinator – Geneieve Tai, geneieve.tai@mcri.edu.au Telephone - 613-8341-6374

For Patients

Each of the CCRN in FA sites is a place where FA patients can go to participate in research studies and to receive clinical care. At every site researchers are conducting natural history and clinical outcome measure studies. These are studies that document the clinical symptoms and progression of FA and evaluate specific tests or measures, such as a neurological scale, timed walk, speech, vision, and quality of life measures, that can be used in future clinical trials. All of the research data collected at each site is gathered into a combined database. Some sites have additional studies, such as hearing evaluations, biomarker studies, and clinical trials.

The investigators and coordinators at each of these sites are very familiar with medical issues related to FA and can provide clinical services as well.

We recommend that you contact the site located close to you to learn about the studies and clinical services being offered.

For Physicians

The CCRN in FA can assist you in offering your patients access to clinical research studies in FA. The investigators and coordinators at each of the sites can work with you to provide guidance on updates in clinical care and management for your patients.

For Researchers

The CCRN in FA wants to work with researchers (academic, pharmaceutical, biotechnology and government) to facilitate investigations of novel interventions and bring improved clinical outcomes to FA patients. Specifically, the CCRN in FA has an established infrastructure that can support the following:

Researchers who would like to learn more about the CCRN in FA or discuss a study should contact the network PI: David Lynch, MD, PhD, Lynch@pharm.med.upenn.edu, 215-590-2242 or Coordinator: Jennifer Farmer, MS, jen.farmer@curefa.org, 610-246-9017.