2016 bdsra mole cln1, cln2, cln3, cln5, cln6, cln7,

1
8 experimental WPs: NEW MODELS Development, validation and optimisation of essential new models & tools PATHWAY LEADS Identifying therapeutic target pathways using genetics & biology METABOLOME Identifying therapeutic target pathways and developing new diagnostic & monitoring techniques using metabonomics NATURAL HISTORY Natural history of the brain and beyond COMPOUND LEADS Identifying new therapeutic compound leads ZEBRAFISH TRIAGE Determination of therapeutic potential using zebrafish GENE THERAPY Gene therapy for the brain, eye and other organs DRUG THERAPY Delivering new small molecule therapy to the mouse 3 facilitating or supporting WPs: Patients’ Organisation involvement Management Ethics Developing new therapies for Batten disease PARTNERS BATCure Consortium Coordinator Sara E Mole MRC Laboratory for Molecular Cell Biology, UCL Institute of Child Health and Department of Genetics, Evolution & Environment, University College London, London WC1E 6BT, UK. [email protected] CONCEPT ORGANISATIONAL STRUCTURE PROJECT DESIGN 45 Tasks/WP 90 Deliverables 50 Milestones Disease Models Iden-fica-on of Surrogate Markers Lead Iden-fica-on & Op-miza-on Drug & Gene Therapeu-c Strategies Prepare for Clinical Trials WP01 + WP04 WP02 + WP03 WP05 + WP06 WP07 + WP08 WP09 PreNdiscovery Discovery PreNclinical Disease Models Iden-fica-on of Surrogate Markers Lead Iden-fica-on & Op-miza-on Drug & Gene Therapeu-c Strategies Prepare for Clinical Trials SMALL MOLECULE UCL, AcureO, USAL, Orphazyme Leads that rescue yeast & zebrafish models Leads from disease biology GENE THERAPY UCL Toxicity CLN3, CLN6 Vectors CLN3, CLN6 Special Responsibility Leads: Communications Dissemination Public Engagement Ethics Exploitation & Innovation Executive Board General Assembly (Decision Making) Participating academic, SMEs & Patient Organisations Work Package Leaders Researchers External Expert Advisory Board Coordinator (UCL) Scientific Coordinator (Mole) Project Manager (Ellis) Project Support (ERIO) Coordina(on & Resources Advice Repor(ng Repor(ng Liaison Leadership Advice & Support Repor(ng Repor(ng & Admin Advice & Support Advice & Support BATCure Novel Models & Tools Effective Treatments & Diagnosis Batten disease Understanding & Awareness WP01 New Models WP07 Gene Therapy WP05 Compound Leads WP10 Management WP11 Ethics WP02 Pathway Leads WP03 Metabolome WP04 Natural History WP09 PO Involvement WP06 Zebrafish Triage WP06 Drug Therapy BATCure transmembrane: CLN3 CLN6 CLN7 CLN8 soluble lysosomal: CLN1 CLN2 CLN5 BATCure will investigate the natural history of Batten disease, elucidate the function of key proteins and determine disease mechanisms, as well as develop new therapies for three forms of the disease. Batten disease is one of approximately 50 lysosomal storage disorders, in which genetic mutations disrupt the cells ability to recycle waste. Children and young adults with Batten disease suffer progressive neurological impairment, which includes: seizures, visual impairment or blindness, personality and behaviour changes, dementia, loss of motor skills and loss of the ability to walk, talk and communicate. There is currently no treatment. This consortium brings together ten leading scientific research groups, three companies and one patient organisation from across Europe, with half applying their expertise and skills to Batten disease for the first time. This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 666918 H2020PHC142015: New therapies for rare diseases Project: 666918 Duration: 36 months Start date: 1/1/2016 Award: €5 995 769 Web site: www.batcure.eu Twitter: @BAT_Cure Facebook: BATCure

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Page 1: 2016 BDSRA Mole CLN1, CLN2, CLN3, CLN5, CLN6, CLN7,

8  experimental  WPs:  NEW  MODELS   Development,  validation and optimisation of essential  new models &  toolsPATHWAY  LEADS   Identifying therapeutic target pathways using genetics &  biologyMETABOLOME   Identifying therapeutic target pathways and developing new diagnostic &  

monitoring techniques using metabonomicsNATURAL  HISTORY   Natural  history of the brain and beyondCOMPOUND  LEADS   Identifying new therapeutic compound leadsZEBRAFISH  TRIAGE  Determination   of therapeutic potential  using zebrafishGENE  THERAPY   Gene  therapy for the brain,  eye and other organsDRUG  THERAPY   Delivering new small molecule therapy to the mouse

3  facilitating  or  supporting  WPs:Patients’  Organisation  involvementManagementEthics

Developing  new  therapies  for  Batten  disease

PARTNERS

BATCure ConsortiumCoordinator  -­ Sara  E  Mole

MRC  Laboratory  for  Molecular  Cell  Biology,  UCL  Institute  of  Child  Health  and  Department  of  Genetics,  Evolution  &  Environment,  University  College  London,  London  WC1E  6BT,  UK.  [email protected]

CONCEPT

ORGANISATIONAL  STRUCTUREPROJECT  DESIGN

4-­5  Tasks/WP90  Deliverables50  Milestones

Disease&Models&Iden-fica-on&of&

Surrogate&Markers&

Lead&Iden-fica-on&&&Op-miza-on&

Drug&&&Gene&Therapeu-c&Strategies&

Prepare&for&Clinical&Trials&

WP01&+&WP04& WP02&+&WP03& WP05&+&WP06& WP07&+&WP08& WP09&

PreNdiscovery& Discovery& PreNclinical&

Disease&Models&Iden-fica-on&of&

Surrogate&Markers&

Lead&Iden-fica-on&&&Op-miza-on&

Drug&&&Gene&Therapeu-c&Strategies&

Prepare&for&Clinical&Trials&

SMALL MOLECULE UCL, AcureO, USAL, Orphazyme

Leads that rescue yeast & zebrafish models Leads from disease biology

GENE$THERAPY$UCL

Toxicity CLN3, CLN6 Vectors CLN3, CLN6

Special Responsibility Leads:

Communications Dissemination

Public Engagement Ethics

Exploitation & Innovation

Executive Board

General Assembly

(Decision Making)

Participating academic, SMEs & Patient Organisations

Work Package Leaders

Researchers

External Expert

Advisory Board

Coordinator (UCL)

Scientific Coordinator (Mole)

Project Manager (Ellis)

Project Support (ERIO)

Coordina(on)&)Resources)

Advice)

Repor(ng)

Repor(ng)

Liaison)

Leadership)

Advice)&)Support)

Repor(ng)

Repor(ng)&)Admin)

Advice)&)Support)

Advice)&)Support)

BATCure)

BATCure

Novel&Models&&&Tools

Effective&Treatments&&&Diagnosis

Batten disease Understanding&&Awareness

WP01&New&Models

WP07&Gene&Therapy

WP05&Compound&Leads

WP10&ManagementWP11&Ethics

WP02&Pathway&Leads

WP03&Metabolome

WP04&Natural&History WP09&PO&Involvement

WP06&Zebrafish Triage

WP06&Drug&Therapy

BATCure

transmembrane:  CLN3  CLN6  CLN7  CLN8  

soluble  lysosomal:  CLN1  CLN2  CLN5  

BATCure will investigate the natural history of Batten disease, elucidate the function of key proteins and determinedisease mechanisms, as well as develop new therapies for three forms of the disease. Batten disease is one ofapproximately 50 lysosomal storage disorders, in which genetic mutations disrupt the cells ability to recyclewaste. Children and young adults with Batten disease suffer progressive neurological impairment, whichincludes: seizures, visual impairment or blindness, personality and behaviour changes, dementia, loss of motor skillsand loss of the ability to walk, talk and communicate. There is currently no treatment. This consortium brings togetherten leading scientific research groups, three companies and one patient organisation from across Europe, with halfapplying their expertise and skills to Batten disease for the first time.

This  project  has  received  funding  from  the  European  Union’s  Horizon  2020  research  and  innovation  programme under  grant  agreement  No  666918

H2020-­PHC-­14-­2015:  New  therapies  for  rare  diseasesProject:  666918

Duration:  36  monthsStart  date:  1/1/2016Award:  €5  995  769

Web  site:   www.batcure.euTwitter:  @BAT_CureFacebook:  BATCure