Individual Patient Database

Padova

Welcome to the Individual Patient Database (IPD) of the Molecular Melanoma Map Project (MMMP)

The IPD is a multicenter database, which gathers anonymized information about clinical and histopathological features as well as availability of biological material regarding patients with cutaneous melanoma enrolled by centers that participate in this project.

Beside the information required by the 7th edition of the AJCC TNM staging system for cutaneous melanoma, the IPD collects essential data of patient treatment and follow-up as well as availability of blood and tumor samples (including primary melanoma, wide excision specimen, sentinel node biopsy, lymphadenectomy and distant metastasis).

Moreover, researchers can record the molecular profile of primary or metastatic melanoma (e.g. mutational status of BRAF and c-Kit).

This databank can be used as a clinical and/or research database for the single center as well as for sharing patient data within the frame of multicenter retrospective and prospective studies.

Data are safely stored within IPD as it is protected by strict rules to access patient data and biobank information.

Access to IPD can be easily obtained by any center involved in melanoma research and treatment through an account application process that can be found using this link. All applications will be evaluated by the MMMP Team and user credentials for identification and authentication purposes will be released to investigators to enable them to upload and update patient data.

Data can be entered in the IPD according to two main modalities:

  1. upload of single patient data directly performed by the user
  2. upload by the MMMP Team of patient series data provided by the user as a MS Excel file
In the latter situation, MMMP data-managers will ensure proper data acquisition in the IPD.

The IPD query tool allows users to download the data belonging to their own center, as well as to know the summary data (including biospecimen availability) of all patients entered into the database.

Users can suggest new studies by using the "Suggest a study" function of the IPD. Thanks to the summary data provided by the query tool, it would be easy to evaluate the feasibility of a study proposal. Ultimately, the MMMP website brings melanoma researchers together fostering the scientific cooperation through study designing, data sharing and analysis.

We hope this database will become an important tool for generating research hypotheses and increasing cooperation between institutions: this should lead to the ultimate goal of the MMMP, which is to increase our knowledge on melanoma biology and treatment, and generate translational research findings with meaningful impact on patient outcome.

Access to the IPD

Researchers interested in using the IPD must create an account using the application form that can be downloaded by clicking this link. An email will be sent to the applicants to acknowledge their request.

The MMMP team will validate individual accounts and a second email will be sent to each user whose account has been activated.

Types of IPD users:

  • Data Manager:
    Once authorized by the MMMP Team, this user can enter and update and use data belonging to his/her own center. Data managers can create new records and update existing data (e.g. update patient data after follow-up visits). They can also query the database, access individual data of patients, export these data into a MS Excel file for research/clinical purposes. Finally they can access the statistical services provided by the IPD to get summaries regarding the IPD content.
     
  • Principal Investigator:
    Once authorized by the MMMP Team, this user can access and use data belonging to his/her own center. Principal Investigators are not allowed to create or modify any record. This policy is aimed to ensure consistency of data, as only one user - namely the data-manager - is authorized to add and modify data within the IPD. Principal Investigators are allowed to use the other IPD functions, such as querying the database, accessing individual data of patients belonging to their center, and exporting these data into MS Excel files for research/clinical purposes. Like data-managers, principal investigators can access statistical services provided by the IPD to get summaries of the IPD content. In addition, principal investigators can suggest new studies based upon the information gathered in the IPD: these proposals will be shared with the other IPD users so to favor collaborative initiatives on melanoma research.
     
  • IPD data managers:
    They are authorized to access anonymized data collected within the IPD. IPD data-managers cannot create or modify any record, unless a formal request is made by the principal investigator or data-manager of a given center. MMMP data-managers will assist users in the process of data entering, with special regard to the upload of patient series data (by means of MS Excel files containing the records of a single center). This latter process is aimed at minimizing the user work load that would be needed to add multiple records on a patient-by-patient basis. In this case he/she will assess conformity of institutional data and data-base structure in order to ensure data consistency and reliability. Once a study proposal is accepted by a group of users, MMMP data managers can be asked by these users to query the IPD and provide them a single MS Excel file with the data of the participating centers. Finally, MMMP data managers can provide statistical services for the analysis of shared data.
     

Use of data stored within IPD

Data managers can export data of patients from their institution at any time.

Should data collected within IPD result in a publication, users are kindly asked to acknowledge the employment of the MMMP IPD in the Material&Methods section of the manuscript using a statement such as the following: "The data used in this publication were gathered in the Individual patient database (IPD) of the Molecular Melanoma Map Project (MMMP) website"

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XPC (A2920C), XPF (T30028C), TP53 (Arg72Pro), and GSTP1 (Ile105Val) polymorphisms in prognosis of cutaneous melanoma.
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PMID: 26427666 [PubMed - as supplied by publisher]

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PMID: 26416068 [PubMed - in process]

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Completion Lymph Node Dissection Based on Risk of Nonsentinel Metastasis in Cutaneous Melanoma of the Head and Neck.
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