Apply to use registry data

Data topics

Permission for use of the data

Family phone interviews

Conducted by the research nurse using standard forms. Data is collected related to the time prior to JDM, at initial diagnosis, and during follow-up after diagnosis (up to approximately 2 to 3 years after diagnosis or until the child is lost to follow-up).

History of the onset of JDM:

  • Onset dates of JDM
  • Antecedent illness/symptoms 3 months prior to JDM

Onset date history of the JDM case:

  • Physician types seen prior to and at diagnosis (by dates)
  • Medicine prescribed at diagnosis
  • Physical therapy and occupational therapy information
  • Functional status at various time points
  • Use of alternative medicine/therapies for JDM symptoms before/after diagnosis

Family background:

  • Child's places of residence since birth by city, state, zipcode and dates.
  • Family structure (mom, dad, siblings by birthdays)
  • Race/ethnic background: (using grandparent logarithm)
  • Family history of 25 autoimmune diseases or 4 psychiatric illnesses
  • Parent's education level and occupation types

The child's medical background:

  • History of mother's pregnancy (prenatal condition)
  • History of breast or formula feeding (by time spent on these/other feeding patterns)
  • History of hospitalizations (prior to and including at diagnosis by dates)
  • History of fractures
  • History of allergic conditions
  • History of immunizations or reactions to immunizations
  • History of other medical/psychological conditions (by dates)

Environment:

  • Personal or family stressful life events three months prior to JDM onset
  • Items on school attendance (where, how many children, how many hours/week, days missed due to illness)
  • Types of insect bites three months prior to JDM onset
  • Excess sun exposures/sunburn three months prior to JDM onset (use of sunscreen)

Descriptions of child's residence:

  • Proximity (within 5 miles) to bodies of water, sources of air pollution, industry exposures, chemical exposures
  • Drinking water supply
  • Exposure to animals/pets Smoking history of members living in child's home

Physician chart reviews

Verified with medical records by the research nurse, collected for initial diagnosis time frame and then annually thereafter until the child is lost to follow-up.

Physician referral patterns: How arrived to primary physician managing JDM Utilization of tests and results: Muscle and/or skin biopsies EMG, EKG, MRI Pulmonary function tests, echocardiograms, esophagrams

Clinical findings at initial visit to your office: Level and distribution of skin involvement Level and distribution of weakness involvement: Functional status Level and distribution of joint involvement

Distribution of pain:   Presence of infection at diagnosis Vital Signs/anthropometrics Radiographic evidence of bone changes Labs: Muscle enzymes, autoantibodies, virus studies Steroid therapy (date of initiation, type and dose)

History of other therapies, outcome data:   Using follow-up data to determine JDM health status, treatment efficacy, and utilization of services over time.

Process for use of JDM registry data

The following process describes how consented subjects in the National Juvenile Dermatomyositis (JDM) Registry have the opportunity to contact individual investigators. The Investigator(s) refers to those who have approved applications to use the Registry for additional research protocols through their institutions.

  1. The Investigator whose protocol has been approved by the Registry Committee must send the JDM Registry staff a proposed study packet which includes: letters that explain the study to the families and who to contact from the proposed study for further information, consent(s), and a self-addressed envelope .
  2. The JDM Registry staff mails out this packet to potential (as per the proposed study's protocol) subjects enrolled in the JDM Registry for the families consideration.
  3. The families send back the signed consent to the Registry staff or a card noting that they are/are not interested in that particular proposed study.
  4. The Investigator and the Registry staff keep a log of those families who have consented, using the JDM Registry's already established numbered coding system. After families have consented, the investigator is notified and has access to confidential data (names, addresses, phone numbers, etc) stored in the Registry databases.
  5. Those families not sending any response within a month from the first mailing receive a second opportunity via a second mailing of the same proposed study packet. Those that do not respond after this second opportunity are not contacted further and are logged as non-responders for that particular proposed study.