Our research database: how to request data

Are you interested in using our data? HollandPTC has a research database consisting of prospectively-collected patient information. This database consists of health, treatment and follow-up information of all consenting patients treated at HollandPTC.

Important note: only researchers from HollandPTC and our consortium partners, Erasmus MC, LUMC and TU Delft can apply for the data.

Available data

There is a wide variety in data available. To make your request as specific as possible, we will schedule a meeting to discuss the data you need in more detail.

Examples of available data in the following categories:

• Demographic information
  sex, age, education level
• Clinical performance of the patient
  length, weight, general and oncological history, use of medication, smoking status
• Tumor information
  tumor site, tumor location, tumor stage
• Diagnostic procedures (imaging)
  CT, MR and PET/CT imaging
• General treatment information
  previous surgery, systemic treatment and/or radiotherapy of the tumor
• Proton therapy-specific treatment information
  treatment plans, total and fraction dose, number of plan adaptations
• Symptoms (including toxicity)
  symptoms before treatment, CTCAE before, during and after treatment
• Tumor follow-up
  local recurrence, metastases, new malignancy, date of death
• Information on the activities performed in HollandPTC
  number of CT, MR, PET/CT scans, number of consultations, number of fractions, first day of radiotherapy

How to request data – for HollandPTC, Erasmus MC, LUMC and TU Delft scientists only

Before you can use our data, your data request will be reviewed, please follow the steps below. Take in consideration that, depending on the research, it will take some time to determine the dataset and receive the approvals (the second and third step).

If you would like to use HollandPTC facilities for a specific study and the data request is part of this, your research proposal will be reviewed as a whole. Please read more about the review procedure for your research proposal on how to apply to use our research facilities.

1. Fill in the data request form below
2. We will get in contact with you to determine what data you need.
   You can use data of one or more test patients to get a better idea of the possibilities and to determine if you can perform the required analysis on the data (also concerning the type of anonymization we’ve applied).
3. Your data request will be reviewed. The same review criteria apply as for a research proposal.
4. If the dataset is determined, the request will be send to the data access panel for the final approval.
   Review criteria of the data access panel are:
   * Does the data request matches the research question?
   * Is only data requested that is actually needed?
   * Is the privacy of patients protected?
5. After approval by the data access panel, the Data Transfer Agreement is prepared (DTA), with the appendices:
   * The R&D checklist or description of data request (as project description)
   * The review form of the data access panel (as description of the data)
   * The HollandPTC publication guidelines
6. Once the DTA is signed by both parties, and the dataset has been prepared, the data will be transferred to you.
7. The data request is finished once you indicate you received that data in good manner and are able to start you data analysis.