redcap rare tumour database
play

REDCap Rare Tumour Database A new data base for rare tumour data - PowerPoint PPT Presentation

Dec 10, 2023 •421 likes •592 views

New Concept/Proposals REDCap Rare Tumour Database A new data base for rare tumour data entry by doctors / hospitals Aim: to collect identical datasets with similar consent (proforma) (phase 1) so that data can be shared internationally once

  1. New Concept/Proposals REDCap Rare Tumour Database A new data base for rare tumour data entry by doctors / hospitals Aim: to collect identical datasets with similar consent (proforma) (phase 1) so that data can be shared internationally once portal / ethics issues addressed (phase 2) REDCap platform – easily accessible online, academic, one license per country required We welcome beta-testers!

  2. New Concept/Proposals REDCap Rare Tumour Database Not all groups have data collection capability across all rare gynae cancer types After discussion at both GCIG and IRCI over some years, recommendation was to use REDCap (academic online) platform – access via the internet (easy) Some reduction in functionality but accessible to all Each site/country wanting to collect their own data would need to pay for one license to REDCap (most universities have a license) – the database is free Data entry would need to be local – data kept on site until approval to share Data could then be shared globally as data collected would be identical TRICEPS (Treat Rare Collect data and Share) – discussions/planning with the NCI Genomic Data Commons (GDC) as portal for sharing – all data owners would choose when they are happy to share via GDC portal – BUT THEY COULD!!!

  3. New Concept/Proposals REDCap Rare Tumour Database Database designed and built in collaboration with COSA Rare Cancer Group and BioGrid Australia (NFP data sharing entity in Australia) Home of CART-WHEEL.org – new online consent available vehicle for data collection for individual studies eg the Whymsical study (World Federation of Waldenstrom’s Macroglobulinemia – graphing function)

  4. New Concept/Proposals REDCap Rare Tumour Database Design – generic to suit all tumour types (not just gynae) Drop-downs where-ever possible Focus on histologic diagnosis, molecular features and treatments received Calculate treatment-free intervals as surrogate for responses Aim to be able to generated annotated stacked swimmers plots to underpin drug approvals for rare indications – or phase 2 expansion studies Forms being tested in Australia: WEHI rare cancer program; On-line beta testing to begin in next 2-3 months (BioGrid process) Other COSA rare cancer group members; ANZGOG international testers welcome!!!! – only in English so far … .

  5. New Concept/Proposals REDCap Rare Tumour Database Annotated Stacked Swimmers Plot Tumour type / Histologic / molecular annotations * Olga Kondrashova, Gwo Ho, WEHI

  6. New Concept/Proposals REDCap Rare Tumour Database Patient consent: Standard pro-forma PICF available All sites to consider ensuring similar wording in their PICF Some hospitals already have a general consent We will provide our PICF with the database and recommend similar phrases be used to ensure can be shared in the future (phase 2) Database Maintenance: Easy to update lists eg genetics / markers / treatments We will continue to make the update version available to sites free of charge (I have 5 years funding for my site and as BioGrid is NFP, we will share)

  7. New Concept/Proposals REDCap Rare Tumour Database

  16. New Concept/Proposals REDCap Rare Tumour Database Contact me (Dr Damien Kee) if you would like to beta-test it: Clare Scott scottc@wehi.edu.au Damien Kee kee.d@wehi.edu.au Provide feedback re database design to date This will also be shared via IRCI – International Rare Cancer Initiative

Download Presentation
Download Policy: The content available on the website is offered to you 'AS IS' for your personal information and use only. It cannot be commercialized, licensed, or distributed on other websites without prior consent from the author. To download a presentation, simply click this link. If you encounter any difficulties during the download process, it's possible that the publisher has removed the file from their server.

Recommend

A Rare Cutaneous Adnexal Tumour with a Rare Presentation 1* 1 Vijayalaxmi S. Patil , Surekha U.

A Rare Cutaneous Adnexal Tumour with a Rare Presentation 1* 1 Vijayalaxmi S. Patil , Surekha U.

JKIMSU, Vol. 5, No. 2, April-June 2016 ISSN 2231-4261 CASE REPORT A Rare Cutaneous Adnexal Tumour with a Rare Presentation 1* 1 Vijayalaxmi S. Patil , Surekha U. Arakeri 1 Department of Pathology, BLDE University's Shri B.M.Patil Medical

282 views • 4 slides
ACI Symposium REDCap 101 Chris Rofe S t Vincents Hospital S ydney REDCap Administrator

ACI Symposium REDCap 101 Chris Rofe S t Vincents Hospital S ydney REDCap Administrator

ACI Symposium REDCap 101 Chris Rofe S t Vincents Hospital S ydney REDCap Administrator Bachelor of S cience (Pharmacology) Masters of Research (Medicine) (pending approval) Presentation focus Is there a need for REDCap? What is

854 views • 38 slides
Pancreatic Desmoplastic Small Round Cell Tumour - A Rare Presentation of Painful Obstructive

Pancreatic Desmoplastic Small Round Cell Tumour - A Rare Presentation of Painful Obstructive

JOP. J Pancreas (Online) 2014 Nov 28; 15(6): 618-621 CASE REPORT Pancreatic Desmoplastic Small Round Cell Tumour - A Rare Presentation of Painful Obstructive Jaundice Duminda Subasinghe 1 , Chathuranga Tisara Keppetiyagama 1 , Hemantha Sudasinghe

312 views • 4 slides
Retropharyngeal Lipoma - A Common Tumour with Rare Presentatjon: A Case Report Rajesh Kumar* and

Retropharyngeal Lipoma - A Common Tumour with Rare Presentatjon: A Case Report Rajesh Kumar* and

Case Report ISSN: 2250-0359 Volume 6 Issue 3: 125 2016 Retropharyngeal Lipoma - A Common Tumour with Rare Presentatjon: A Case Report Rajesh Kumar* and Amber Kesarwani Department of E.N.T., I.M.S., B.H.U., Varanasi, India *Corresponding

684 views • 4 slides
REDCAP REDCapAdmin@URMC.Rochester.edu Agenda Introductions What is e-Consent?

REDCAP REDCapAdmin@URMC.Rochester.edu Agenda Introductions What is e-Consent?

REDCAP REDCapAdmin@URMC.Rochester.edu Agenda Introductions What is e-Consent? REDCap Framework Auditing & Storage Getting Started IRB Approval AIT Implementation Sample e-Consent Demo Important Links

304 views • 7 slides
New Zealand Have a national Rare Donor Program: Yes Number of Donors in Database: 54 Definition

New Zealand Have a national Rare Donor Program: Yes Number of Donors in Database: 54 Definition

ISBT WORKING PARTY ON RARE DONORS New Zealand Have a national Rare Donor Program: Yes Number of Donors in Database: 54 Definition of Rare: Majority based on a frequency of 1:1000 except for Jka-b- which assumes a different status based on our

69 views • 3 slides
ISBT WORKING PARTY ON RARE DONORS Israel Have a national Rare Donor Program: Yes Number of

ISBT WORKING PARTY ON RARE DONORS Israel Have a national Rare Donor Program: Yes Number of

ISBT WORKING PARTY ON RARE DONORS Israel Have a national Rare Donor Program: Yes Number of Donors in Database: Rare 1000,Ag- ~ 20,000 Definition of Rare: <1: 1000, or rare combination Number of Frozen Rare Cells: 1500 How are Rare Donors

428 views • 3 slides
ISBT WORKING PARTY ON RARE DONORS Canada Canadian Blood Services Have a national Rare Donor

ISBT WORKING PARTY ON RARE DONORS Canada Canadian Blood Services Have a national Rare Donor

ISBT WORKING PARTY ON RARE DONORS Canada Canadian Blood Services Have a national Rare Donor Program: Yes Number of Donors in Database: Rare donor code 6260: 1849 donors coded Definition of Rare: A donation/RBC is considered to be rare

67 views • 6 slides
ISBT WORKING PARTY ON RARE DONORS SINGAPORE Have a national Rare Donor Program: YES Number of

ISBT WORKING PARTY ON RARE DONORS SINGAPORE Have a national Rare Donor Program: YES Number of

ISBT WORKING PARTY ON RARE DONORS SINGAPORE Have a national Rare Donor Program: YES Number of Donors in Database: 8 donors Definition of Rare: 1:1000 Number of Frozen Rare Cells: 16 units How are Rare Donors found?: Screened & ABID Number

326 views • 3 slides
ISBT WORKING PARTY ON RARE DONORS Switzerland Have a national Rare Donor Program: Yes Number of

ISBT WORKING PARTY ON RARE DONORS Switzerland Have a national Rare Donor Program: Yes Number of

ISBT WORKING PARTY ON RARE DONORS Switzerland Have a national Rare Donor Program: Yes Number of Donors in Database: Switzerland, Germany and Austria have since 2011 one common database Switzerland: 364 (since 2005) Germany: 44 (since

50 views • 4 slides
ISBT WORKING PARTY ON RARE DONORS INDIA Have a national Rare Donor Program: No. Number of Donors

ISBT WORKING PARTY ON RARE DONORS INDIA Have a national Rare Donor Program: No. Number of Donors

ISBT WORKING PARTY ON RARE DONORS INDIA Have a national Rare Donor Program: No. Number of Donors in Database: ----- Definition of Rare: Lacking high incidence antigens or lacking a combination of common antigens Number of Frozen Rare Cells:

156 views • 3 slides
ISBT WORKING PARTY ON RARE DONORS USA American Rare Donor Program (ARDP)- in 2011 - 82 members

ISBT WORKING PARTY ON RARE DONORS USA American Rare Donor Program (ARDP)- in 2011 - 82 members

ISBT WORKING PARTY ON RARE DONORS USA American Rare Donor Program (ARDP)- in 2011 - 82 members 51,576 rare donors in database Shipped 2131 rare units; 16 international Members maintain inventories; respond to requests ISBT WORKING PARTY ON

230 views • 6 slides
ISBT WORKING PARTY ON RARE DONORS The Netherlands Have a national Rare Donor Program: YES

ISBT WORKING PARTY ON RARE DONORS The Netherlands Have a national Rare Donor Program: YES

ISBT WORKING PARTY ON RARE DONORS The Netherlands Have a national Rare Donor Program: YES Number of Donors in Database: 728 Definition of Rare: Phenotype < 1000 and not available as walking donor Number of Frozen

304 views • 3 slides
ISBT WORKING PARTY ON RARE DONORS SPAIN Have a national Rare Donor Program: Yes Number of Donors

ISBT WORKING PARTY ON RARE DONORS SPAIN Have a national Rare Donor Program: Yes Number of Donors

ISBT WORKING PARTY ON RARE DONORS SPAIN Have a national Rare Donor Program: Yes Number of Donors in Database: 781 Definition of Rare: We consider a phenotype to be rare when the phenotype frequency is 1 in 1000 donors or less. Number of Frozen

192 views • 3 slides
ISBT WORKING PARTY ON RARE DONORS FRANCE Have a national Rare Donor Program: Yes Number of

ISBT WORKING PARTY ON RARE DONORS FRANCE Have a national Rare Donor Program: Yes Number of

ISBT WORKING PARTY ON RARE DONORS FRANCE Have a national Rare Donor Program: Yes Number of Donors in Database: 1780 D efinition of a donor: 1 cryopreserved RBC unit Definition of Rare: Prevalence < 1/250 Legal definition, which only

72 views • 5 slides
AN UNUSUAL PRESENTATION OF PANCREATIC VASOACTIVE INTESTINAL PEPTIDE TUMOUR (VIP OMAS) WITH

AN UNUSUAL PRESENTATION OF PANCREATIC VASOACTIVE INTESTINAL PEPTIDE TUMOUR (VIP OMAS) WITH

Lu Hao Feng et al., IJSIT, 2016, 5(6), 528-533 AN UNUSUAL PRESENTATION OF PANCREATIC VASOACTIVE INTESTINAL PEPTIDE TUMOUR (VIP OMAS) WITH GASTROINTESTINAL STROMAL TUMOUR (GIST) WITHOUT HYPOKALEMIA AND HPERCALCEMIA: A CASE REPORT WITH REVIEW

396 views • 6 slides
Formal Privacy for Functional Data with Gaussian Perturbations Matthew Reimherr Department of

Formal Privacy for Functional Data with Gaussian Perturbations Matthew Reimherr Department of

Formal Privacy for Functional Data with Gaussian Perturbations Matthew Reimherr Department of Statistics Pennsylvania State University Contributors Current work: Aleksandra Slavkovic, Professor of Statistics and Associate Dean for Graduate

472 views • 18 slides
Dataplane Specialization for High-performance OpenFlow Software Switching Lszl Molnr,

Dataplane Specialization for High-performance OpenFlow Software Switching Lszl Molnr,

Dataplane Specialization for High-performance OpenFlow Software Switching Lszl Molnr, Gergely Pongrcz, Gbor Enyedi, Zoltn Lajos Kis Levente Csikor, Ferenc Juhsz, Attila K orsi, Gbor Rtvri TrafficLab, Ericsson Research,

457 views • 21 slides
Batch Proving and Proof Scripting in PVS C esar A. Mu noz munoz@nianet.org National

Batch Proving and Proof Scripting in PVS C esar A. Mu noz munoz@nianet.org National

Batch Proving and Proof Scripting in PVS C esar A. Mu noz munoz@nianet.org National Institute of Aerospace AFM 2006 NIA @ NASA LaRC 1 The PVS Theorem Prover PVS is a powerful interactive theorem prover. For expert users: PVS provides

442 views • 33 slides
exp( 161ogm ) (logm) 1 =<exp -(logm)/3 -<2 1/3- 2 10 4 m With similar high

exp( 161ogm ) (logm) 1 =<exp -(logm)/3 -<2 1/3- 2 10 4 m With similar high

SIAM J. COMPUT. 1991 Society for Industrial and Applied Mathemaut;s Vol. 20, No. 1, pp. 22-40, February 1991 002 DETERMINISTIC SAMPLING--A NEW TECHNIQUE FOR FAST PATIERN MATCHING* UZI VISHKIN? Abstract. Consider the following three-stage

356 views • 19 slides
ETC5512: Wild Caught Data ETC5512: Wild Caught Data Week 12 Week 12 The proper care and feeding

ETC5512: Wild Caught Data ETC5512: Wild Caught Data Week 12 Week 12 The proper care and feeding

ETC5512: Wild Caught Data ETC5512: Wild Caught Data Week 12 Week 12 The proper care and feeding of wild data Lecturer: Dianne Cook Department of Econometrics and Business Statistics ETC5512.Clayton-x@monash.edu Image source:

486 views • 33 slides
SYNTHESIS OF NOVEL ( )- CIS-EXO -NORBORNANE AMINO ACID CONTAINING CYCLIC HEXAPEPTIDE: ANALOGUE

SYNTHESIS OF NOVEL ( )- CIS-EXO -NORBORNANE AMINO ACID CONTAINING CYCLIC HEXAPEPTIDE: ANALOGUE

SYNTHESIS OF NOVEL ( )- CIS-EXO -NORBORNANE AMINO ACID CONTAINING CYCLIC HEXAPEPTIDE: ANALOGUE OF DOLASTATIN 16 Presented By Sravanthi Devi Guggilapu sciforum-006262 CONTENTS INTRODUCTION LITERATURE REVIEW OBJECTIVE OF THE WORK

724 views • 43 slides
Newer Drugs for Myelofibrosis Giovanni Barosi Center for the Study of Myelofibrosis Fondazione

Newer Drugs for Myelofibrosis Giovanni Barosi Center for the Study of Myelofibrosis Fondazione

Newer Drugs for Myelofibrosis Giovanni Barosi Center for the Study of Myelofibrosis Fondazione IRCCS Policlinico S. Matteo Pavia, Italy New Drugs in Hematology Bologna, 9-11 May 2016 Specific targeted therapies for MF Category Drugs

290 views • 24 slides
MASSACHUSETTS INSTITUTE OF TECHNOLOGY Physics Department 8.044 Statistical Physics I Spring Term

MASSACHUSETTS INSTITUTE OF TECHNOLOGY Physics Department 8.044 Statistical Physics I Spring Term

MASSACHUSETTS INSTITUTE OF TECHNOLOGY Physics Department 8.044 Statistical Physics I Spring Term 2013 Notes on Thermodynamic Systems Several definitions are needed as one begins a discussion of thermodynamic systems. These defined quantities

73 views • 4 slides

More recommend