RDB Revison INDEX — First Draft

From the editor… The 2007 NORD PRP Report has 12 sections. The revision process has three steps: (1) Select a section to review. You can start with #1 and work your way down to #11 OR jump around. Each section stands alone. (2) Whatever your selection, please review the brief description below, before you click DRAFT. (3) Please use the “Leave a Reply” comment box on the DRAFT webpage to offer your suggestions, identify errors of omission and commission, or make ANY comments that might help us create a more useful guide for the PRP community. 01 — Synonyms — A list of other names for this disorder.  Lower case should be used except for proper names and acronyms.  Subdivisions should be listed separately. DRAFT

02 — Summary: A brief summary of approx. 250-300 words that gives the most basic information about incidence, age of onset, characteristic symptoms, and the availability of effective treatments.  The idea is that this would allow anyone to be able to quickly rule in or out a specific rare disorder as being something that may be what is affecting them, their family member, or patient. DRAFT

03 — Introduction: A brief explanation, if necessary, about the history of a disorder including when it was first identified and by whom. DRAFT

04 — Signs and Symptoms: This section should detail all of the clinical and physical findings associated with a disorder including age of onset, progression rates, etc.  All potential symptoms and physical findings should be included.  If certain symptoms only occur rarely, then they may not require a detailed explanation. DRAFT

05 — Causes: This section covers what specifically causes the disorder  and what happens within the body to cause symptoms.  DRAFT

06 — Affected Populations: This section explains who gets the disorder – gender predilection, age of onset, ethnic background, etc.  Some disorders are more prevalent in women than men and vice versa, or more prevalent in one ethnic group or region of the world than another, or only occur in childhood or only in adulthood.  All information of this nature should be noted in this section. Incidence and prevalence rates (if known) should also be included in this section. DRAFT

07 — Related Disorders: This section includes disorders that are part of the differential diagnosis. DRAFT

08 — Diagnosis: This section provides information on how a disorder is diagnosed including what signs may be noted to suspect a disorder and information on what tests may be used to confirm a diagnosis.  DRAFT  

09 — Standard Therapies (Treatment): This section includes all approved therapies for a disorder or all therapies that are generally accepted as first-line or important therapies for a disorder (even if not officially approved).  This section will also detail what types of physicians and health care professionals may assist in treatment when a multidisciplinary approach is warranted. DRAFT

10 — Investigational Therapies: This section details therapies that are being studied for use in a particular disorder or have been used anecdotally in a handful of cases, but have not been extensively studied.  NORD has standard language about finding and participating in clinical trials that should always be used in this section and is sometimes the only information in this section because there may simply be no treatments being investigated. DRAFT

11 — Resources: This section includes all organizations that can provide further assistance to individuals seeking information on a particular disorder.  This is not limited to disease-specific organizations.  Writers updating reports should verify accuracy of contact information and links currently listed for organizations.   DRAFT

12— References: This section should include all sources of information used in creating the report.  It is generally broken down into three sections – textbooks, journal articles and information obtained from the Internet.  Hyperlinks to journal articles and web pages are provided. (Note:  The dates associated with the current references range between 1984 and 1999. The goal of the 2017 revision is to update the sources to 2013-2017.  NO DRAFT.  (References will be compiled when the final draft is submitted to NORD.

2017 NORD PRP Report Revision