Our Team
cTAP is a coalition of some of the most prominent people and organizations within each different group of stakeholders in the Duchenne community.

That includes an international group of researchers; leading drug developers that includes multinational pharmaceutical companies and smaller biotechnology firms; clinical registries from the leading research institutions in Duchenne muscular dystrophy; and pioneering advocacy organizations that have led the way in the fight against Duchenne.

Clinical Centres and Clinical Networks
Patient data upon which biostatistical analyses are conducted is the backbone of cTAP.

De-identified patient data shared with cTAP has been collected by major neuromuscular paediatric care centres, as well as by networks of clinical centres, primarily from Europe and North America; it includes natural history, real world and clinical trial data.

We are grateful to these clinical centres, clinical networks and their staff for curating patient data; to patient organizations for their financial support, and to drug companies for the clinical trial data they shared with cTAP.

Finally, we thank all patients and their families for consenting their data for research.

Fondazione Telethon, Italy

iMDEX and AFM-Téléthon, France

Northstar UK and Muscular dystrophy UK


Children’s Hospital of Philadelphia

Cincinnati Children’s Hospital Medical Centre, USA

Pediatrics and Child Neurology, University Hospitals Leuven, Belgium

Biomarin and CureDuchenne


PTC Therapeutics

Summit plc

cTAP Members
Joint Steering Committee

Astellas Pharma: Makoto Kashiwa, Ph.D. Medicine, D.M.V., Executive Director

Catabasis: Joanne Donovan, M.D., Ph.D., Chief Medical Officer

Charley’s Fund: Laura Dalle Pazze, A.B., President and Chief Operating Officer

CureDuchenne: Debra Miller, B.A., Founder and CEO

FibroGen, Inc.: Elias Kouchakji, M.D., Sr. Vice President, Clinical Development, Drug Safety and Pharmacovigilance

Genentech: Karl Yen M.D., M.M.Sc, Associate Group Medical Director

Italfarmaco SpA: Paolo Bettica, M.D., Vice President, Research and Development

Parent Project Muscular Dystrophy: Abby Bronson, M.B.A., Senior Vice President, Research Strategy

Pfizer, Inc.: Michael Binks, M.D., Vice President for Rare Disease Clinical Research

PTC Therapeutics: Francesco Bibbiani, M.D., Vice President, Clinical Development

Sarepta Therapeutics: Ashish Duggar Ph.D., M.B.A, Vice President, Global Medical Affairs

Shire plc: Csaba Siffel, M.D., Ph.D., P.M.P., Director of Pharmacoepidemiology

Solid Biosciences: Jorge Quiroz, M.D., Chief Medical Officer

Wave Life Sciences: Stephen Lake, Ph.D., Vice President, Biometrics

Collaboration Management Team

Susan J. Ward, Ph.D., Founder and Executive Director, cTAP

James Signorovitch, Ph.D., Managing Principal, Analysis Group

Gautam Sajeev, Ph.D., Manager, Analysis Group

Seden Grippon, Ph.D., Project Manager, cTAP; Consultant, Grippon Consultancy

Katherine Beaverson, Communications Lead, cTAP • Senior Director and Patient Advocacy Lead, Rare Disease Research Unit, Pfizer, Inc

Universitàs Cattolica del Sacro Cuore logo
Fondazione Telethon logo
UZ Leuven logo
UCL logo
Muscular Dystrophy UK logo
NorthStar Clinical Network logo
cincinnati Children's Hospital Medical Center logo
UC Davis logo
Imaging DMD logo
CINRG logo
University of Florida College of Medicine logo
AFMTelethon logo
The John Walton Muscular Dystrophy Research Centre logo
Children's Hospital of Philadelphia logo
Children's National Health System logo
Therapy Developers
PTC Therapeutics logo
Sarepta Therapeutics logo
catabasis logo
shire logo
pfizer logo
SOlid Biosciences logo
Eli Lilly logo
mitobridge logo
astellas logo
roche logo
italfarmaco logo
Summit logo
bristol-myers squibb company logo
biomarin logo
Marathon Pharmaceuticals logo
Wave Life Sciences logo
FibroGen logo
Biophytis logo
Patient Groups
Cure Duchenne logo
Parent Project Muscular Dystrophy logo
Charley's Fund logo
Data Science
Analysis Group logo